Series on Perinatal Hospice

The Dallas Morning News is publishing a two-part series on perinatal hospice, the first of which appeared in the paper yesterday. The team working on the series included reporter Lee Hancock and photographer Sonya Hebert, who worked together on a series on end-of-life care at Baylor University Medical Center in Dallas.

The series follows the story of Laux family, who are expecting a child with profound abnormalities and is expecting to only live hours or days after birth. Through the help of an experienced hospice nurse, they develop a birth plan for their son.

After hearing the grim prognosis, T.K. spoke first: Thomas was meant to be theirs, he told the doctors, and Thomas had a purpose. However brief his life might be, it was a gift.

People rallied around the Lauxes as they told family and friends of their decision. A cousin introduced them to Kathy Rose, the one Dallas-area hospice nurse who worked full time with dying children.

At any given time, Rose guided at least a dozen kids and their parents through journeys no family ever wanted to take. Though North Texas has no prenatal hospice programs, Rose and her colleagues at Community Hospice of Texas have cared for several dozen trisomy infants. She was the first person the Lauxes met who'd even seen a trisomy 13 baby.

In late March, the nurse came to the Lauxes' home and explained how she would help them and their doctors develop a birth plan. If it was possible to bring Thomas home, hospice also could provide support – meeting them at the hospital to plan, providing oxygen equipment and medicine to manage symptoms such as breathlessness, anxiety and discomfort.

Rose and her colleagues also would come at least several times a week to check on them. Whatever happened, she would be a brief drive away.

It was reassuring to the couple that Rose talked so comfortably about death – how it might come for Thomas if he survived his birth, and when, and what they could do to ensure he didn't suffer.

Supporting People with Intellectual Disabilities through Illness, Grief and Loss

HFA is offering a one hour educational webinar on September 15: Supporting People with Intellectual Disabilities through Illness, Grief and Loss

Nationally-known experts Claire Lavin, PhD, and Kenneth J. Doka, PhD, will discuss the importance of helping those with intellectual disabilities face illness and grief during Hospice Foundation of America's (HFA's) new live online webinar on Tuesday, September 15, 2009, from 1pm -- 2pm EDT.

"Persons with intellectual disabilities must have support to cope with normal grief reactions, and caregivers need to understand how to help," states Dr. Doka, Senior Consultant to HFA. Dr. Lavin and Dr. Doka will discuss how persons with intellectual disabilities may respond to the illness and death of a loved one; the challenges involved when those with intellectual disabilities face their own end-of-life situations; and the role that caregivers play in providing education and support. The speakers will also discuss how partnerships between organizations can better serve this population.

Claire Lavin, PhD, is a professor of psychology at The College of New Rochelle in New York. A licensed clinical and school psychologist, she works with children and adults with disabilities in facilities and schools. Kenneth J. Doka, PhD, is a professor of gerontology at the Graduate School of The College of New Rochelle. Dr. Doka has served as a panelist on all sixteen of HFA's Living With Grief National Bereavement Teleconferences. Dr. Lavin and Dr. Doka co-authored Older Adults with Developmental Disabilities.

"For over sixteen years, HFA has been the leader in presenting high-quality educational programming on hospice care, grief and loss, and end-of-life issues through our annual teleconference," said Amy Tucci, President/CEO of HFA. "This webinar gives organizations a new opportunity to easily access this informative programming."

Register now or learn more about the program here.

End of Life and Palliative Care in the News

With all the attention focused on various health care reform bills, there has been a lot more discussion in recent weeks about the end of life and palliative care in the media. Here are a few articles:

• Dr. Pauline W. Chen writes about the importance of talking about end of life often in her Doctor and Patient column in the New York Times.

  While the timing and appropriateness of these discussions should be considered in each individual case, talking about end-of-life care “doesn’t inhibit or prohibit patient choices. Instead patients will be more likely to make better informed decisions and to get the kind of care they want. And physicians will have an idea of their patients’ preferences, regardless of what those preferences are.”
  
  “At this point,” Dr. Prigerson reflected, “the studies show that patients and families benefit. Even if they are not told, patients who are dying probably suspect that something isn’t right. They appreciate the honesty of these conversations, which in turn enhances their trust in and the therapeutic alliance with their doctors.
  
  “If patients remain silent, their voices won’t be heard. And the effect on patients and surviving family members can be significant and enduring.”



• While giving information on end of life options is important, a study appearing in the American Journal of Respiratory and Critical Care Medicine showed that over 40% of caregivers preferred that physicians do not express personal views about end-of-life care.
  

  "Our findings reveal that surrogates' views are heterogeneous, with a substantial minority preferring not to receive a recommendation from physicians," the authors concluded.
  
  "To best meet surrogates' needs, we recommend that physicians ask surrogates whether they would like to hear the physician's recommendation and view the recommendation as a starting point for shared deliberations about how to act for the good of the patient."
  
  Randall Curtis, MD, of Harborview Medical Center in Seattle and president of the American Thoracic Society, predicted the study would have a practice-changing impact on physicians.
  
  "I had previously assumed that almost all families would want physicians' recommendations, but these findings indicate that there is no such consensus among surrogates," Curtis said in a statement.
  
  "I suspect that physicians can do more harm by withholding a recommendation that is desired than by providing a recommendation that is not desired, but this study suggests we should ask rather than assume."



• U.S. News & World Report discusses facts about palliative care in their Living Well column.
  

  Hospice care, a type of palliative care, does not always spell the end. Hospice also tends to a person's comfort and emotional and spiritual well-being, but without the treatments to prolong life or aggressively treat disease when illness is considered terminal and death seems inevitably near. The Medicare Hospice Benefit, which provides the vast majority of hospice coverage—though private insurers and Medicaid do, too—requires two doctors to certify that, to the best of their knowledge, the patient is not likely to live six months. About 90 percent of people in hospice choose to die at home, explains Shumacher, where care is usually given by family with the support of social workers, nurses, physicians, home health aides, bereavement counselors, spiritual counselors, and volunteers.
  
  But some patients' health stabilizes, or even improves, in hospice. One misconception, says Meier, is that "hospice is a one-way ticket out of town—it's not." She has had a number of patients who've done better under the coordinated care of hospice and whom she has taken "off benefit" in order to get them, say, a new heart failure protocol to treat the disease. Should her patient take another turn for the worse, hospice becomes available again. "You need a doctor who knows how to work the system on your behalf," says Meier.



• At the New York Times, Anemona Hartocollis wrote a feature on palliative care. Following a palliative care doctor at Montefiore Medical Center, this piece examines the conversations between patients, family members, and their physicians at the end of life. Hartocollis points out that New York teaching hospitals rank lower on utilization of hospice care compared to the rest of the nation.
  

  At Montefiore, only 12 percent of dying patients from 2001 to 2005 entered hospice care, for an average of 4.9 days, during their last six months of life, according to the latest data from the Dartmouth Atlas of Health Care.
  
  At Mount Sinai, it was 14 percent of patients for 4.6 days; at NewYork-Presbyterian, 15 percent for 5.2 days; and at New York University Medical Center, 20 percent for 6.7 days, according to the Dartmouth data.
  
  Nationally, nearly 32 percent of dying patients had hospice care during the same period, for an average of 11.6 days.
  
  In New York, hospice is “brink-of-death care,” said Dr. Ira Byock, the director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and the author of “Dying Well.”
  
  While treatments that try to extend lives produce more fees for doctors and hospitals, they may be given for reasons besides money. “Many clinicians don’t want to send the message that they’re giving up on their patients,” said Dr. David Goodman, a co-author of the Dartmouth Atlas. “They see palliative care as diminishing hope.”

A Hospice Volunteer Story

This local Colorado newspaper article talks about the role one volunteer plays from Hospice and Palliative Care of Northern Colorado.

When a person is dying alone in one of the rooms of Hospice and Palliative Care of Northern Colorado, the staff calls Bedingfield to sit beside them, to talk, to hold their hand. To say it's all right to let go.

A quiet, self-effacing man, you can tell Bedingfield doesn't want to talk much about himself, about what he volunteers for, about the people he's helped.

How many hospice bedsides has he sat by in 29 years?

“Maybe 400,” he says.

How long does he stay with the patient?

“Two hours isn't unusual.”

But Bedingfield doesn't view the end of life as a loss. “It's sad, but it's a victory too,” he says. “It's the end of a person's valuable experience.”

Special Concerns for Same-Sex Parents for End-of-Life Care

National Public Radio's Tell Me More program recently featured a discussion of the unique concerns faced by same-sex parents when planning for end-of-life care.

Expanding Pediatric Hospice Care Options

Carol Ann Campbell writes for Kaiser Health News about changes in the hospice care model for pediatric patients.

New models of care similar to hospice but not limited to children who are dying have emerged in a handful of states, and many more are moving in that direction. The programs provide services for a broader range of severely ill children, such as those with congenital defects, muscular dystrophy, HIV/AIDS, massive burns or serious brain damage from car accidents and near-drownings.

Medicaid, the state-federal health program for the poor and disabled, is paying for services in an increasing number of states, among them Florida, California and Colorado. States that obtain federal permission to use Medicaid funds must demonstrate that the programs won’t add to costs. While advocates insist these initiatives can save money, not everyone is convinced. In New Jersey, officials are not seeking Medicaid coverage because of “financial constraints,” a spokesman said.

“Hospice is a philosophy of community-based care that supports the entire family, medically, socially and spiritually,” said Lori Butterworth, co-director of the Children's Hospice and Palliative Care Coalition in California. “We've created a new service model to meet the needs of children.”

Hospice was created with adult cancer patients in mind, and experts say the traditional approach does not work well for children, even when the prognosis is dire. “No parent will give up a chance to cure their children in order to get more services,” Butterworth said.

Private insurance programs generally follow the same rules as Medicaid and Medicare, the federal health program for the elderly and disabled, requiring a six-months-to-live

Recent Awards in End-of-Life Care and Caregiving

• The American Hospital Association announced the winners of its 2009 Circle of Life Award, which honors innovation in palliative and end-of-life care.

  2009 Circle of Life Winners
  Four Seasons, Flat Rock, North Carolina

  Oregon Health and Science University Palliative Medicine & Comfort Care Program, Portland, Oregon

  Wishard Health Services Palliative Care Program, Indianapolis, Indiana

  Programs receiving 2009 Citations of Honor

  Palliative Care Service, St. John’s Regional Medical Center, Oxnard, California and St. John’s Pleasant Valley Hospital, Camarillo, California

  Gilchrist Hospice Care, Towson, Maryland and Greater Baltimore Medical Center, Baltimore, Maryland

• The American Association of Homes and Services for the Aging (AAHSA) announced their 2009 award recipients. AAHSA honors "individuals and organizations that embody excellence in leadership, care and services, and that are making outstanding contributions to their communities and the aging-services field."
• The National Alliance for Caregiving and MetLife Foundation 2009 winners of the National Family Caregiving Awards. The award recognises "community-based programs supporting family caregivers of older adults, rewarding innovation, effectiveness, and responsiveness to caregiver needs."

Hawaii to Join States Offering POLST

The Hawaii hospice and palliative organization Kokua Mau, announced that recent legislation passed in the state will allow Physician Orders for Life-Sustaining Treatment (POLST) to come to Hawaii.

For more information on which states are currently using POLST, see this website hosted by the Oregon Health & Science University. Here is their description of POLST:

The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.

End-of-Life Care in the News

As health care reform continues to be debated, some interesting pieces on end-of-life care have appeared in the past couple weeks on. Here are a few:

• Eleanor Clift wrote in Newsweek that we need to address end of life issues head on as part of health care reform. Clift is a hospice supporter, she joined the board of the National Hospice and Palliative Care Organziation four years ago, after her husband died at home with hospice care.
• On the wowOwow website, Joan Larsen interviews Jane Brody, a health reporter for The New York Times and the author of The Guide to the Great Beyond, about her book and death and dying in the United States.
• Judy Bachrach writes in Obit magazine about the advance care planning section of the House bill on health care reform, referencing Charles Lane's recent column from the Washington Post.
• Dr. Byock, the author of Dying Well and director of palliative medicine at Dartmouth-Hitchcock Medical Center, guest blogs at the New Health Dialog about the health care reform debate.

• Ezra Klein interviews Republican Senator Johnny Isakson (GA) in the Washington Post. Isakson believes advance care planning coverage should be included as part of health care reform.

• James Clement writes an editorial about the health care debate in the Culpepper Star-Exponent (VA) and mentions HFA.

Seventh Edition of Palliative Care Grand Rounds Available

The August 2009 of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up "risa's pieces" blog.