Palliative Care Highlighted in Upcoming National News Broadcast

The husband of the late Dr. Desiree Pardi (who we posted about here after a feature in the New York Times) and Diane E. Meier, MD, director of the Center to Advance Palliative Care (CAPC), will appear on CBS Sunday Morning segment focusing on palliative care this weekend.

The show airs Sunday, May 2, from 9-11 AM EDT (check your local listings.)

UPDATE - this segment will air at a later date.

Before and After the Death, Online

We have posted about the phenomenon of virtual grief, online bereavement, and the way mourning has changed in the digital age. This week, attention has been paid to writers who share their dying process online. Eva Markvoort, a 25-year-old Canadian with cystic fibrosis, shared her story of living with a terminal disease on her blog until her death on March 27. CNN, Tonic, and the Pallimed blog have written about her blog, 65 Red Roses.

Another young writer, Alicia Parlette, who wrote about her cancer for the San Francisco Chronicle, died on April 22. While young people seem particularly comfortable sharing their experiences publicly and online, older writers such as Judi Chamberlin (who wrote her Life as a Hospice Patient blog until her death in January 2010) also share their end-of-life stories with the general public.

After the death, social networking sites serve as a place for people to gather and mourn together. This recent article from the Kansas City Star discusses sites like Legacy.com, where online obituaries serve as a virtual place for people to mourn.

HFA is holding a webinar on the role of Internet support for grieving children and adolescents on June 15, 2010. It is the third in a series on Helping Children and Adolescents Cope with Grief and Loss. This webinar is designed to help counselors, clergy, social workers, child life specialists, educators, guidance counselors, funeral directors, and parents understand 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 discussion will include a look at both social networking sites and grief-specific sites, as well as the impact that role-playing and on-line gaming may have in a young person's experience of loss. The panel will focus on both the advantages and disadvantages of the Internet as a form of grief support for adolescents, and give some specific examples of how they have used this technology to support young people.

The World Congress 2nd Annual Leadership Summit on End of Life Care

Best Practices for Enhancing the Delivery of Care for Palliative and Hospice Patients
June 24-25, 2010 - Chicago, IL


The World Congress 2nd Annual Leadership Summit on End of Life Care will convene employers and senior level executives from health plans and health systems, as well as hospice and other provide groups, to discuss the critical issues surrounding the delivery of end of life care.

With thought provoking case studies and in-depth presentations, health care professionals will discuss both hospice and palliative care as they relate to the delivery of care, outcomes, accountability and cost-effectiveness.

HFA Senior Consultant Kenneth J. Doka will be speaking at the summit. View the complete speaking line-up today and download a brochure for detailed agenda information!

SAVE $200 on the current registration rate when you mention PROMO CODE: BKY754 and PRIORITY CODE: HL10030-70070! (Not valid for gov’t/academic rate)

Call 800-767-9499 or visit www.worldcongress.com/EOL to register or for more information.

Notes for Caregivers - Awards, Support, and Survey Information

• The National Alliance for Caregiving and MetLife Foundation are accepting applications for their 2010 National Family Caregiving Awards Program. The program is "intended to improve the quality of life of family caregivers by recognizing and supporting the important work of community agencies and other organizations that support family caregivers as a significant part of their mission. Each award will carry a cash value of $20,000 that will be designated for use in the awardee’s caregiver program."

• The American Cancer Society is offering a series of telephone workshops for loved ones of those with cancer. The free workshops include tips and practical problem-solving techniques, as well as time for questions. The following telephone sessions are scheduled:
• Monday, May 3, 2-3:15 p.m., and Wednesday, May 12, 7-8:15 p.m., on copayments and out-of-pocket costs you did not expect
• Tuesday, June 8, 2-3:15 p.m., and Wednesday, June 16, 7-8:15 p.m., on caregiving and pain relief
Register by contacting the American Cancer Society at (800) 966-3586 or visit www.cancer.org/sacaregiverworkshops.

• The National Alliance for Caregiving is conducting a survey of caregivers of veterans. The research is planned to "learn what family caregivers of veterans need, and what resources could be offered through the community and the Veteran's Administration to support them in their caregiving role."

• A small study examining caregiver stress published in a recent issue of Aging & Mental Health showed people experience very different types and amounts of stress. Steven Zarit, a human development and family studies professor at Penn State University stated:
  

  "Behavior issues are a common stressor, but caregivers don't always report that their family member has behavior issues," said Zarit. "Some people feel more strain from the sense that they've lost a relationship with their family member, or because of conflict with siblings or other relatives. It's different for everyone."
  

  About 4 million people in the country care for a family member with dementia, Zarit says. Most often care continues for five to seven years, but some caregivers take on this role for 15 to 20 years.

Spirituality at the End of Life

Spirituality and end-of-life care in the news:

• A hospice chaplain in Tennessee writes about ministering to the unconscious patient in a way that respects the person's spirituality.
• A hospice medical director writes about a recent AAHPM (American Academy of Hospice and Palliative Medicine) conference he attended and a session on taking a patient's spiritual history.
  
  This session impacted me the most because as a fellowship trained Palliative Care Physician I had always advocated for spiritual care as an important piece of patient care, but never truly appreciated the spiritual care component until this presentation. I felt like my eyes were opened and I had a deeper understanding of spirituality in palliative care. How can one presentation make such an impact.
  
• This article from Christianity Today interviews Michael Balboni, M.Div. Th.M., is a researcher at the Dana Farber Cancer Institute and Ph.D. candidate at Boston University, discussing two studies that have examined the relationship between a patient's faith and their medical decisions at the end of life.
• In Psychology Today, a Unitarian Universalist minister addresses a patient's dreams at the end of life.
  
  Anyone who works with the terminally ill and the dying will notice, sooner or later, that those approaching the threshold of death tend to dream vivid and emotionally compelling dreams. Those who serve as helpers and companions to the dying are also more likely to have gripping and dramatic dreams themselves. It is impossible to accompany those in the process of dying without being confronted in the dream world with compelling metaphors of all one's own unfinished psycho-spiritual "business".
  
• This Rabbinical Coordinator from the Hospice of Palm Beach County reflects on his views about spirituality and hospice care.
  
  Specifically, as chaplains, or pastoral counselors, we apply a variety of techniques in our spiritual caring of our hospice patients and their families. Our spiritual caring begins with supportive presence and listening actively, with care and interest. We encourage the patients, and or their loved ones, to engage in reviewing the life of the patient, with a view to achieving the recognition that there is far more here than meets the eye.
  
• A local Illinois newspaper writes about a hospice patient and one of her therapists, Rosemary Salerno.
  
  Salerno, who works with several hospice programs and is also a grief counselor, says that balancing the limits of medical science with attention to emotional and spiritual care makes a difference.
  
  "Death is out of the closet," she says. "So much of our experience as human beings is about how we navigate through loss and how we grow from it. Hospice gives us a language of dying, a tradition of dying that we've never had in this society. We now have the opportunity to use this experience of death as our path to awakening something bigger within ourselves."
  
  . . .
  
  The matters to address in dying well, Salerno says, are three forms of pain: physical, emotional and spiritual.

Hospice Foundation of America's 2011 initiative will focus on Spirituality at the End of Life during our annual national teleconference on April 13, 2011. Sign up for our e-newsletter to stay informed as we develop this program.

Studying the Effectiveness of Palliative Radiation in Cancer Patients

The journal Cancer recently published a study of 33 cancer patients referred for palliative radiotherapy at the University Hospital of Duesseldorf in Germany from December 2003 to July 2004, who died within 30 days. Of those 33 patients, 91 percent received radiotherapy and only 58 percent completed their course of therapy before death. The treatment can relieve pressure, stop bleeding and help control pain. Researchers found that:

Many physicians overestimated the length of time their patients would survive. Among this group who died within one month, about one in five physicians predicted more than six months survival. In addition, progressive complaints were noted in 52 percent of patients, and palliation or pain reduction was reported by only 26 percent of patients.

The authors concluded that radiotherapy was not appropriately customized to these cancer patients, many of whom did not benefit despite spending most of their remaining life on therapy. Excessive radiotherapy in end-stage cancer patients may reflect overoptimistic prognoses and unrealistic concerns about radiation damage.

Graduating High School with a Hospice Nurse by his Side

The Kansas City Star published a touching article Friday about a local high school student with bone cancer, who was given the gift of an early graduation by his school. His hospice nurse was there throughout the ceremony and his trip back home.

Many people don’t realize the wonderful ways hospice can help patients live life to the fullest while facing a terminal illness. This article showcases the best that hospice care can offer a patient, a chance to fulfill a dream.

Connor Olson graduated from Tonganoxie High School on Thursday. He was the only graduate.

He brought his parents, his grandma — and his hospice nurse.

Connor has spent an exhaustive year fighting bone cancer, with one round of chemo, radiation and surgery after another. Forty weeks in the hospital over the last year.

His condition worsened in recent weeks. Then, over the weekend, the 18-year-old, newly minted Eagle Scout suffered a stroke that paralyzed his left side and left him largely unable to speak.

On Wednesday, the principal and faculty of the school arranged a spur-of-the-moment graduation ceremony for Connor because he never took his eyes off the prize.

His diploma.

When Families Grieve on PBS Tonight

The Sesame Workshop, the nonprofit organization behind Sesame Street, is airing When Families Grieve nationwide tonight at 8:00 PM ET/ PT (check local listings.)

The one hour primetime television special features Katie Couric and the Sesame Street Muppets and presents families’ personal stories about coping with the death of a parent, as well as strategies that have helped these families move forward.




The When Families Grieve program is part of a larger initiative that includes multimedia and bi-lingual (English and Spanish) resource kits that aim to help families with young children:

• Reduce the levels of anxiety, sadness, and confusion that children may experience following the death of a parent;
• Provide families with age-appropriate tools to support and comfort children, including ways to talk about death with a young child; and
• Reassure children that they are loved and safe, and that together with their families and friends, they can learn ways of being there for one another and move forward.

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HFA's education webinar series, Helping Children and Adolescents Cope with Grief and Loss, is examining children's grief in-depth. The three-part series includes:

Bereavement Camps for Kids: Benefits and Challenges (archived, on-demand, available through January 31, 2011.) Panelists include: Sherry Schachter, Director of Calvary Hospital's annual bereavement camp in New York; Angela Hamblen, Director of Camp Good Grief in Tennessee; Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.

Bereaved Children and Adolescents: Lessons from Research (archived, on-demand, available through April 13, 2011.) Panelists include J. William Worden, co-principal investigator for the Harvard Child Bereavement Study and Irwin N. Sandler, Regent's Professor of Psychology, Arizona State University.

Grieving Children and Adolescents: The Role of Internet Support on Tuesday, June 15. Panelists will include Pamela Gabbay of the Mourning Star Center and National Alliance of Grieving Children and Cendra Lynn, founder of GriefNet and KidsAid.com.

Register for the series here. The Organization Registration Fee for the three-part series is $250, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited complimentary CEs (1.5 hours) available for a wide range of professions. If purchased separately, the Organization Fee is $100 per program. Individuals may register for each webinar for $35 and 1.5 hours of CE credit is included for the registered individual. To learn more, contact HFA at 800-854-3402 or see the website.

Friday is National Healthcare Decisions Day

April 16, 2010 is National Healthcare Decisions Day. The National Healthcare Decisions Day Initiative is a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and opportunity to communicate and document their healthcare decisions.

Take time to complete your advance directives and let your family know about your end-of-life care wishes. See HFA's website for information on Advance Care Planning. It matters.

Last week we posted about a study appearing in the New England Journal of Medicine that examined whether patients with advance directives who lacked the capacity to make decisions received their preferred care. Researchers reviewed 3,746 deaths and found that 67.6% had advance directives in place. Those instructions were almost always carried out by decision-making surrogates. From the Los Angeles Times:

"This is a big change from the early '90s, when studies reported that only about 20% of people had advance directives," said Dr. Maria J. Silveira, a clinical scientist at the Veterans Affairs Ann Arbor Healthcare System and an assistant professor at the University of Michigan. "I think it shows the public has bought into this and thinks it's important."

The study, published in the New England Journal of Medicine, is among the first to look at how well advance directives work. Most common among such documents are living wills and durable powers of attorney. The former specifies the types of medical treatment desired should an individual become incapacitated; the second gives someone else the legal authority to make decisions for the patient.

Balancing Realism and Hope in Caring for Cancer Patients

Underlying the reluctance both patients and clinicians feel about discussing end-of-life issues is the possibility that hope may be lost. Hearing that disease is incurable and that death is likely, even if it is far off in the future, has an emotional impact that can be devastating. Hopelessness is a state that most people dread and therefore avoid if at all possible. Redefining hope, and helping it to evolve as death approaches, is a key to helping with the transition (Evans, Tulsky, Back, & Arnold, 2006).

It is important to make a distinction between appropriate hope and false hope. Fostering false hope, or colluding in it with patients and families who are grasping for any hint of good news, may result in failed expectations and regret over lost opportunities to live fully with whatever time people have together. Appropriate hope focuses on what can actually be done in real life, whether the disease can be cured or not. Clayton, Butow, Arnold, and Tattersall (2005) found that patients feel it is possible for clinicians to foster coping skills and nurture hope while discussing even poor prognoses and end-of-life issues. Even bad news helps people cope better than no news because it reduces uncertainty, which promotes worries about imagined outcomes that can be worse than the ones that are likely to happen.

Humans are extremely adaptable and, with support, can adjust to situations that might seem intolerable to others. The key for clinicians is to leave space, in their own awareness and in their relationship with patients, for hope to evolve, as it often does near the end of life. Remarkable transformations can happen when patients learn to face what they had been afraid to contemplate, and as they begin to trust enough to let go of the control that may have seemed indispensable before. As the end of life nears for many patients and families, hope becomes irrelevant because life in the present moment is all that is needed.

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Excerpt of "The Transition to Palliative Care" by Brad Stuart, from HFA's 2010 book, Living with Grief^®: Cancer and End-of-Life Care. Read the complete table of contents. This publication is available for purchase now.

About the author: Brad Stuart, MD, is the primary author of Medical Guidelines for Prognosis in Selected Non-Cancer Diseases, used to develop the national Medicare hospice eligibility criteria. He has received the Heart of Hospice Award from the National Hospice and Palliative Care Organization, and the California State Hospice Association’s Pierre Salmon Award. In 2007, he was voted “Physician of the Year” by the California Association for Health Services at Home. Dr. Stuart was featured in the HBO documentary Letting Go: A Hospice Journey, and has been interviewed on ABC’s Good Morning America. He wrote and hosted Care Beyond Cure: Hospice Helping Physicians Treat the Terminally Ill, a nationally televised medical continuing education video that won an International Angel Award for Media Excellence. He has published widely and lectured internationally on medical, psychosocial, and spiritual issues at the end of life. He was a member of HFA's 2010 teleconference panel, Cancer and End-of-Life Care, his third appearance on an HFA teleconference.

April 2010 Palliative Care Grand Rounds

The April 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 Palliative Care Success blog.

End of Life Choices Challenge All of Us

The latest installment of the New York Times' "Months to Live" series, "Helping Patients Face Death, She Fought to Live," discusses the end-of-life choices made by a young palliative care physician while being treated for cancer. The article has received a lot of attention and comment, addressing the physician's personal choices and the field of palliative care in general.

You can also read articles from the rest of the series. Dr. Lyle Fertig offers his thoughts on the article on Pallimed's blog.

End-of-Life Care Notes

• The New England Journal of Medicine published a study that examined whether patients with advance directives who lacked the capacity to make decisions received their preferred care. Researchers reviewed 3,746 deaths and found that 42.5% of patients needed to make treatment decisions near the end of life. More than 70% of those people lacked the capacity to make choices and the majority, 67.6% had advance directives in place. Those instructions were almost always carried out by decision-making surrogates. From the Los Angeles Times:

  "This is a big change from the early '90s, when studies reported that only about 20% of people had advance directives," said Dr. Maria J. Silveira, a clinical scientist at the Veterans Affairs Ann Arbor Healthcare System and an assistant professor at the University of Michigan. "I think it shows the public has bought into this and thinks it's important."
  
  The study, published in the New England Journal of Medicine, is among the first to look at how well advance directives work. Most common among such documents are living wills and durable powers of attorney. The former specifies the types of medical treatment desired should an individual become incapacitated; the second gives someone else the legal authority to make decisions for the patient.

• Michael Wilkes, M.D., professor of medicine at the University of California-Davis, writes in The Sacramento Bee that doctors need to discuss end-of-life care options with patients more frequently.

We all engage in a conspiracy of silence around end-of-life issues. Doctor, patient and families infrequently address issues that will occur at the end of a person's life. It is magical thinking – as if saying "you are dying," "there is no cure," or "I am ready to die" will bring on a sudden seizure of unmanageable pain for both the dying and those in their lives. There is no acknowledgment that we all must die some time and that people have strong preferences for how they want this to happen.

Doctors are convinced that people don't want to know how ill they are. Of course, more often than not, everyone knows the truth – rarely is imminent death from illness a surprise to the dying person or his or her family. Still, we use euphemisms and go to great efforts to avoid discussing specifics as part of a ritualistic dance around the truth.

• Les Morgan writes on the Growth House blog about a comparative study of palliative care guidelines and official practice statements for end-of-life care provided by over 34 health organizations published in BMC Palliative Care.

  The overall conclusion of the study is that "An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model."

• A telephone survey funded by CareFirst BlueCross BlueShield in Maryland interviewed 1,195 adult Maryland residents about advance care planning. Respondents were asked whether they have an advance directive, where they had received information on them, and where they would like to receive such information. Researchers from the Johns Hopkins Bloomberg School of Public Health's Department of Health Policy and Management reported that approximately 66 percent of respondents did not have advance medical directives.

• The Courier-Journal (KT) is featuring the story of Terrell Shively, a 23-year-old man with sickle cell disease. The collection of articles, videos, and blog posts follows the Shively family, as they prepare for Terrell to die, and grieve the loss of another daughter who died from sickle cell disease in 2005.

• BusinessWeek (part of Bloomberg News) published an article by executive editor Amanda Bennett weighs the costs and benefits gained during the course of her husband's kidney cancer treatment. He died in 2007, seven years after his initial diagnosis.

• Jane E. Brody, health writer for The New York Times, writes a very personal story about her husband's death from lung cancer.

• John Schumann, MD, an internal medicine physician at the University of Chicago write on the KevinMD blog about dying in a hospital setting.

  The simple reasons that people die in the hospital are:

  1. Some people prefer it. Battlers to the bitter end.
  2. (For those that don’t prefer it:) They aren’t empowered to do it any other way.

  This second group is the one for whom death in the hospital is a shame. And though we’re getting better at comforting the dying, hospitals (believe it or not) are just not set up to deal with the dying process very well.

Pediatric Hospice and Palliative Care Notes

• Researchers reported in the February 2010 issue of the Journal of Palliative Medicine that pediatricians are cautious about treating chronic pain in children. Only 32.3 percent of pediatricians surveyed from Florida and California said treatment of chronic pain was their responsibility.

• Johns Hopkins School of Nursing has received a grant from the National Institute for Nursing Research, part of the National Institutes of Health. The $1 million two-year grant will be used to develop and test training methods to integrate palliative care into the treatment of children with chronic diseases.

• Brian McMichael reviews an article from the Archives of Pediatrics & Adolescent Medicine on "Considerations About Hastening Death Among Parents of Children Who Die of Cancer" for the Pallimed blog. He followed with a second posting about the article, "Symptoms and suffering at the end of life in children with cancer: an Australian perspective" that was published in the Medical Journal of Australia.

  I think that taken together these two studies highlight the problems of under-treatment and late-treatment of symptoms in children with end-stage cancer, as well as importance of appropriate, anticipatory information for and communication with parents and caregivers. What caught my eye about these studies is that they were conducted and published at all, and upon further consideration, that they made it through the IRB process (having sat on one). I think that illness, suffering and death of children are psychologically white-hot. They touch upon our hopes, fears, guilt and shame, as health care professionals, and even more personally as family members ourselves, and as human beings.

• Dr. Robert Macauley, a pediatrician on the Pediatric Advanced Care Team at Vermont Children's Hospital, wrote an op-ed in the Burlington Free Press urging residents of Vermont to support "concurrent palliative services and curative care" to children with life-limiting illnesses.

• This article from Texas' The Tribune newspaper shares the work of the Now I Lay Me Down to Sleep Foundation. Over 7,000 photographers volunteer their services through the foundation to help parents celebrate the lives of babies who are stillborn or die shortly after birth.

• A study published in The American Journal of Critical Care surveyed pediatric nurses and "asked them to rank the severity and frequency of behaviors or situations that helped or hindered their end-of-life care for terminally ill children. Nearly 500 nurses across the country responded and said they would like to see improved communication, less medical intervention when there is no hope of recovery and greater understanding from families about the importance of a peaceful death."

Future Social Workers Aim to Increase Awareness of Hospice

This University of Pittsburgh student newspaper article talks about six graduate students working on a project to increase the awareness of hospice care among older patients. The project, funded by a series of grants from the Hartford Partnership Program for Aging Education, targets professionals in the medical community.

“We are concerned that older patients are not taking advantage of the benefits available as a part of hospice care,” said Mara Krotec, who works on the project. “Our concern comes in large part because too many people see a physician’s referral to hospice as a death sentence — as the end.”

The goal of their project, which the students developed independently from professors and advisers, is not to raise the number of hospice referrals but to increase public awareness about what hospice care entails.

The article did contain two errors worth noting; it states that, "Currently the average stay in a hospice is only 12 days, in spite of the fact that hospice benefits are available for up to six months." In 2008, the average length of stay was 69.5 days according to data from NHPCO. In addition, hospice benefits are not capped at six months. When entering hospice, a patient's prognosis for life is six months or less, however, patients can receive services for longer periods as long as a physician re-certifies that they have a prognosis of six months or less.