Upcoming Summer Conference - Contemporary Issues in Grief, Loss and Life Transitions

The George Washington University will host its End-of-Life Care Summer Institute 2010, "Contemporary Issues in Grief, Loss and Life Transitions" on July 22-24th.

Hospice Foundation of America is pleased to serve as a sponsor for this important program. The George Washington University's four-day institute in Grief, Loss, and Life Transitions is a multi-disciplinary, interactive educational program addressing current issues and best practices in bereavement support and loss. 

Open to graduate-level students, counselors, social workers, clergy, chaplains, nurses and other bereavement professionals, the curriculum presents both traditional and alternative models of grieving and adaptation. Presentations and discussion focus on loss issues facing children, military personnel, and adults at post-retirement and advanced aging, with the term "loss" delineated in various personal, social, community, and cultural contexts.

For more information, go to www.eolcsummerinstitute.com

Memorializing Teens in School Yearbooks

Eric Adler and Laura Bauer of the Kansas City Star write about the disparate ways area high schools handle memorializing deceased teenagers in school yearbooks.

In the smiling world of high school yearbooks, the rule is often get a picture of every student — no matter how popular, no matter how unpopular.

The Student Council president and the Goth. The stoner and the cheerleader. The freaks, geeks, jocks and geniuses.

For both sensitivity (all kids are special) and marketing (more kids pictured means more books sold) the motto inscribed in most school yearbooks these days could easily be agnosco sulum: Recognize everyone.

Except one category of students: those who die.

They interview several yearbook advisers about school policies and the difficulties involved in honoring the students who have died.

Hospice Business Note

The New York Times reports today that home health provider Gentiva Health Services is buying hospice provider Odyssey HealthCare in a deal that is expected to close in the third quarter of 2010.

The companies said the deal would create a hospice care provider with an average daily patient census of about 14,000 and operations in 30 states. They anticipate the combination will create a company with more than $1.8 billion in annual revenue. Gentiva expects the acquisition to add to adjusted earnings per share within the first 12 months following closing.

“The two companies share similar geography between Gentiva’s home health operations and Odyssey’s hospice operations, with very little overlap between the two companies’ hospice programs,” the chief executive and president of Gentiva, H. Anthony Strange said in a statement.

Grief Online

The Bereavement Center, a program of Hospice of the Western Reserve, recently posted about Facebook and grief:

Technology has afforded us a wonderful way to stay connected as a community. Facebook not only brings together long-lost friends, but also provides an effective outlet for grief. Facebook hosts many memorialized accounts of deceased users. Friends and families can continue to post photos and comments on these accounts. Facebook will respect a family’s wishes to take down the deceased user’s profile or keep it in a “memorial state.” The “memorial state” disables certain features like status updates and allows only confirmed friends to access the profile.

Members who are grieving a death often use their own profile to announce the death and funeral arrangements. Many individuals post messages, videos and photos about their deceased loved one. They can also create new groups or pages devoted to the deceased or causes associated with them. Members continue to comment on their loss and talk about how much they miss their loved one. Friends comment back and show their support.

HFA has been exploring how children and adolescents can use the Internet as an outlet for grief. Join us during our June 15 webinar, Grieving Children and Adolescents: The Role of Internet Support. Panelists Pamela Gabbay (Mourning Star Center and National Alliance for Grieving Children) and Carla Sofka (associate professor of social work at Siena College in New York) will examine the roles of the Internet in the lives of children and adolescents and discuss ways that adolescents may utilize the Internet in bereavement, for education, ritual and support. We’ll look at some innovative ways that programs use the Internet to encourage and support young people who are grieving, and also explore the clinical benefits and challenges associated with using the Internet.

Guidelines on Implanted Electronic Devices Issued

Last month we posted a study of hospice patients with implantable cardioverter defibrillator (ICD) that showed that the devices were not always being deactivated in terminal patients, causing unnecessary suffering at the end-of-life. This past Friday, the Heart Rhythm Society issued new guidelines recommending all patients with implanted electronic devices be encouraged to have advance directives addressing whether to remove the device. If a patient is incapacitated, a healthcare proxy should decide. The American College of Cardiology and the American Heart Association also participated in developing the guidelines.

Read coverage of the guidelines in the New York Times and HealthDay News. The National Hospice and Palliative Care Organization has issued a statement and released a position paper in 2008 on the devices. The president of the American Academy of Hospice and Palliative Medicine wrote a letter to the New York Times in response.

Providing Hospice Care During Emergencies

The President and CEO of Alive Hospice in Tennessee has posted about their efforts to provide care for patients during the recent flooding in her state.

Alive Hospice caregivers gave their all to make sure the needs of our patients and families were met. As the rain continued to fall:

• Alive Hospice began contacting our home care patients — more than 400 in all — to make sure they were safe and had everything they needed. Staff who were unable to leave their homes joined in this effort, checking on each of their patients by phone and coordinating with staff who could respond to immediate needs in person.
• We worked with emergency responders to ensure rescue for patients in danger.
• For patients displaced by the storms, we provided a safe haven at our inpatient facilities: Alive Hospice Residence Nashville, Alive Hospice at Saint Thomas Hospital and Alive Hospice at Skyline Madison Campus.
• Many employees took on extended shifts at Alive Hospice’s inpatient units when others couldn’t make it to work due to the storms.
• Staff who were able to drive continued visiting patients in their homes as normal and volunteered to take on additional patient visits for colleagues who were immobilized.

The hospice is also offering free grief counseling for anyone who lost a loved one due to the flooding.

It was nearly two years ago that we posted about hospice preparedness when severe floods hit the Midwest. The National Nurse Emergency Preparedness Initiative (NNEPI) provides a great set of resources for hospice and home health nurses to help prepare for a variety of emergency scenarios.

New Caregivers and Veterans Law

The Caregivers and Veterans Omnibus Health Services Act (S. 1963) was signed into law May 5, 2010. The law helps family caregivers of veterans by providing information and training, ongoing supportive services, respite, and counseling. Those caring for veterans who were injured in the line of duty after September 11, 2001 can receive healthcare coverage, certification, and a caregiver's stipend.

The law also aims to improve care for veterans living in rural areas by increasing housing and transportation assistance, and expands healthcare services for women veterans.

NHPCO Releases Statement on Palliative Sedation

The National Hospice and Palliative Care Organization released a position statement today on palliative sedation therapy, stating it can be a treatment option for "the very limited number of imminently dying patients whose pain is intolerable and unresponsive to other palliative interventions. . . ."

NHPCO defines palliative sedation as "the lowing of patient consciousness using medications for the purpose of limiting patient awareness of suffering that is intractable and intolerable."

The statement and commentary also appear in the May 2010 Journal of Pain and Symptom Management.

Read past coverage of palliative sedation therapy.

Testing Concurrent Hospice Treatment

The Philadelphia Inquirer and Kaiser Health News report on part of the new U.S. health reform law that will test allowing patients to receive hospice services while undergoing curative treatments. Under the new law, Medicare is instructed to run up to 15 pilot projects testing this model (Sec. 3140.)

Some fear doing both curative and palliative care will muddle efforts to get patients to embrace the hospice philosophy emphasizing quality of life. "It could be great," says Terry Berthelot, an attorney with the Center for Medicare Advocacy, a Connecticut-based patients' rights group. But it also "may make dying more difficult, because some people may be chasing after cures instead of what hospice is about, to say 'thank you,' to say 'I forgive you' - that emotional work."

More than a million Medicare beneficiaries - both those over 65 and those like Meisenhelder, who is 55 and on disability - used the hospice benefit in 2008, at a cost of $11.2 billion, according to the Medicare Payment Advisory Commission. It's one of the fastest-growing components of Medicare.

Medicare makes hospice available to anyone with a prognosis of six months or less to live; in 2008 the average length of stay was 83 days. While a patient can drop out of hospice at any time and resume treatment through Medicare's traditional benefits, many people still see accepting hospice as an irrevocable decision.

Some advocates believe offering both modes of care can save Medicare money. If hospice providers are helping patients manage their pain and symptoms, that may reduce costly visits to emergency rooms and hospitals. Two commercial insurers, Aetna and UnitedHealthcare, already allow their hospice patients who are insured through private plans to pursue curative treatments. Randall Krakauer, who oversees Aetna's Medicare and concurrent-care programs, says the change did not increase the program's costs.

"If you let people take hospice and curative care concurrently, they will come to their own decisions on their own," he says. "The decisions will usually be consistent with the hospice philosophy or approach."

HFA Presents Webinar on 'Grieving Children and Adolescents: The Role of Internet Support' - June 15

Nationally-known expert Kenneth Doka, Senior Bereavement Consultant to Hospice Foundation of America (HFA), will host a discussion focusing on the role that the Internet plays in the lives of grieving young people and the implications for clinicians during Hospice Foundation of America's  (HFA's) live online webinar  on Tuesday, June 15  from 1pm-2:30pm EDT. Dr. Doka will be joined by Dr. Carla Sofka, Associate Professor of Social Work at Siena College in New York, and Pamela Gabbay, Program Director of The Mourning Star Center for Grieving Children in Palm Desert, California.

"For young people, the Internet is an essential source of communication and information," says Dr. Doka. "So it is natural they would turn to the Internet when they grieve." Participants will learn both the advantages and disadvantages of utilizing the Internet in grief and learn strategies for opening a dialog with children and adolescents about the ways the use the Internet as they mourn. The clinical implications of research of Internet use for intervention with children and adolescents and their families will be examined, describing the possibilities and limitations for adults or organizations to offer support in a monitored, safe way.
"It is essential that counselors, clergy, social workers, child life specialists, educators, guidance counselors, funeral director, and parents understand what Dr. Sofka has defined as "thanatechnology"-the use of technology in death and grief-related issues," says Amy Tucci, President and CEO of HFA. "This webinar offers an excellent opportunity to learn more about both the research and the practical use of these resources with grieving young people."

The Organization Registration Fee is $100, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited CEs (1.5 hours) available for a wide range of professions.  Individuals may register for the live webinar for $35 and 1.5 hours of CE credit is included for the registered individual.  This webinar is part of a three-part series sponsored by the Moyer Foundation; a Registration Fee of $250 allows unlimited access and CEs for one year to all three webinars in the series.  Learn more about this exciting educational offering by contacting HFA at 800-854-3402 or going to the website.

May 2010 Palliative Care Grand Rounds

The May edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Medical Futility blog run by Thaddeus Pope. Be sure to check it out!

Hospice Stories: Hospice Lent a Heartfelt Hand

My Personal Experience with Hospice

by Judie Mackie

My personal experience with hospice came recently when my step-father passed away. My mother quietly hugged my neck after the doctor suggested moving Pop from the hospital to the hospice facility down the street and gently whispered, “This is all happening so fast, oh please don’t let him die on Christmas Day!” He had been fighting the good fight and the decision from admitting him into the hospital or sending him home changed when he had a seizure while the doctor was in the room. Immediate tests were ordered and revealed a severe brain bleed; nothing more could be done.

Pop had made it through the night which was more than many expected. His rest appeared tormented even with the morphine shots he was receiving every two hours. His breathing was labored, the room was cold and the monitors sporadically interrupted our dreaded fears as the deafening clock on the wall counted down, ticking the seconds away while the arrangements for his transfer to the hospice facility were made.

The hospital nurses were kind and left us alone while we made a few quiet phone calls to the family. The clock continued, but we wanted time to stop right there. Mom kissed Pop’s head and held his hand while she opened the Christmas gift he had chosen for her just two weeks before. We felt it was appropriate that she open the gift in front of him even though Christmas was still two days away. The gold and diamond pendant expressed his love for her; he had chosen a gift that would describe how much he loved and appreciated her. She hasn’t taken the necklace off since it was clasped around her neck, left to dangle over her heart.

The nurse came back in to see if any of us needed anything and to inform us that the ambulance had arrived to move Pop to hospice. Her strength admirable, my mother stood and took a deep and tortured breath, holding back the reckless sobbing that would come pouring out had she dared to part her lips. Her love for this man was strong and undeniable; she wanted more time to share the plans they had made.

Just the mention of hospice brings a finality that no one wants to hear. “Hospice is beautiful,” the nurse encouraged. “The rooms are cozy and decorated like bedrooms and each one has its own theme. One is all decorated up in a fishing theme.”

“Oh he loves fishing,” Mom volunteered. “Maybe that room will be available.”

Right away we noticed that hospice smelled better than the hospital and commented on such as we gathered in the waiting room. A soft spoken woman offered us coffee or tea and showed us around the surprisingly ample kitchen for such a small facility. A social worker came out to speak with us about how we were welcome 24 hours a day and how to access the building after hours. She asked if we had any questions, but some were no longer important and others suddenly escaped our thoughts. They kept our minds occupied while we waited to see Pop. We were functioning in an existence between two worlds, nothing felt real… and we felt nothing but a dull, aching numbness. Some weird type of autopilot seemed to have taken control, despite of – or possibly because of – the lack of sleep combined with an indescribable emotional turmoil erupting within our souls.

In no time, the staff settled Pop into his new room. Painted in a calming shade of beige, the open blinds looked onto an immaculate courtyard. Comfortable furniture adorned the room that was aglow with warm incandescent lighting. The white chenille bedspread was like the one my grandmother used to have on her feather bed when I was a child. The area was bigger than I imagined, not at all like the hospital’s institutionalized box and the absence of tubes, monitors and machines permitted Pop to rest comfortably.

The staff was reassuring and offered words of comfort. A young woman made her rounds visiting the patients with a sack full of toys; and she laid a plush Santa in the bed with him. Someone else brought in a tall white tapered candlestick nestled in a small glass holder; a card tied on with ribbon held the words of the 23rd Psalm. We stayed until late in the evening when Mom said she’d like to go home and try to get some sleep. My step-brother had already committed to spending the night with Pop, so she felt confident the love of her life would be in the best of hands without her there.

At 3:15 AM the phone rang and we were woken up with the realization that if we wanted to see Pop again, we had to return to hospice immediately. The end for us all is inevitable, but suddenly the end was approaching at break neck speed and no one was ready to say goodbye. As we gathered silently around the bed, each of us afraid to leave the room for even a moment, we found the inner strength to say our goodbyes through tears and through touch as our throats burned with pent up screams of despair for our sorrow and our loss. We silently watched the lines of pain disappear from his face as his body released his energy, his life, and his spirit… on Christmas Eve.

While the ordeal of my step-father’s passing was both emotionally and physically exhausting, the hospice staff was amazingly courteous. We knew the end was imminent for Pop, and allowing him to expire in the care of the hospice facility was ten times better than if he had remained in the hospital. I appreciated the hospice staff and their attention to even the oddest of our requests during this difficult time. I would recommend to anyone that is faced with making these tender, yet painful decisions for a loved one to accept the services of hospice. Although losing a loved one was unimaginably personal, hospice lent a heartfelt hand, gently guiding us through this anguished journey.