Impact of Palliative Care on Dying

The HFA team visited with Loren Friedman, MD, Medical Director - Palliative Care Service at the Virginia Hospital Center in Arlington, VA last week to discuss the expanding role of palliative care in hospitals.

Dr. Friedman, a former hospice medical director, reflected on the need for hospital-based palliative care:

I think in a best-case scenario you would not need palliative care teams because every physician, every nurse would be able to manage symptoms and help support families. The reality is, even when you do have physicians and nurses with a lot of experience and expertise, they often do not have the time to address the broader needs of patients and families.

HFA's New Perspectives program, Beyond Kübler-Ross: New Perspectives in Death, Dying, and Grief examines the impact palliative care has had on the way Americans experience the dying process and so much more.

Hurry! Early registration for Beyond Kübler-Ross ends September 14th! Register today and save!

HFA's New Lunch 'n Learn Series Announced

Hospice Foundation of America is excited to offer a fresh approach to a new set of one-hour educational programs, our “Lunch 'n Learn” series. Each one will feature a panel of experienced professionals offering their own expertise on the topic as well as discussing it with one another and the moderator. If you logon for the live version of the program you will have the opportunity to send in questions that the panelists will answer and discuss during the program.

HFA’s 2011/2012 “Lunch 'n Learn” programs begin October 5, 2011. Each program will examine a different topic to meet the diverse need of hospices and communities around the country. Then each one will be available for up to a year after its initial live air date. The cost is $85 per program for hospice (or other) organizations and $35 per program for individuals. CEs are available at a cost of $10/person. Register now to make sure you don’t miss out on these timely and helpful topics!

• The Hospice Appropriate Patient
  This program goes beyond the older concepts of the typical hospice patient to explore a wider array of hospice appropriate diagnoses and indicators. Additionally, the program will discuss barriers to hospice care and the ways in which a hospice and the surrounding community can work together to overcome them. Using this information, hospices and communities will be able to identify and serve more patients facing life-threatening diagnoses and prognoses. View the list of board approvals. Panelists are Hank Willner, MD and Jennifer Carlson, RN, CHPN, and they will be joined by Phil Carpenter, MDiv, from HFA.
  Available October 5, 2011, 1:00 – 2:00 pm ET | Board Approvals | Register
• Talking with Dying Patients and Their Families This Lunch 'n Learn segment focuses on the difficult conversations that take place, or need to take place, with a dying patient and his or her family. Topics will include how to begin a conversation, what issues need to be discussed, how to cope with barriers to open communication and other approaches that can assist a dying patient and their family. View the list of board approvals. Panelists are Hank Dunn, MDiv and Diana Davis, RN, and Geoff Coleman, MD, and they will be joined by Phil Carpenter, MDiv, from HFA.
  Available December 7, 2011, 12:00 1:00 – 2:00 pm ET  | Board Approvals | Register
• Grieving Children: How You Can Help
  In this program, clinicians will be offered proven approaches and techniques that can support and comfort the sometimes invisible population of grieving children. Participants will have a chance to hear discussions of time-tested literature as well as newer research, and at the same time hear from clinicians who have a wealth of experience in counseling grieving children and their families. View the list of board approvals. Panelists are: Ken Doka, PhD, MDiv, and David Crenshaw, Ph.D., and they will be joined by Phil Carpenter, MDiv, from HFA.
  Available May 9, 2012, 1:00 – 2:00 pm ET | Board Approvals | Register
• Caregiver Burnout/Compassion Fatigue: How It Affects Professionals – and How to Beat It
  This program explores the themes of caregiver burnout and compassion fatigue. In looking at the subject from both the layperson and professional point of view, participants will gain deeper understanding of not only what creates burnout and fatigue, but crucially, what can be done to cope with it and reduce its impact.
  Available June 13, 2012, 1:00 – 2:00 pm ET | Board Approvals | Register

Palliative Care Summit Urges Integration of Care

Earlier this month, the National Institute of Nursing Research, a component of the National Institutes of Health and its partners, held a summit on end-of-life and palliative care. HFA’s social worker, Karyn Walsh, attended part of the summit and reports,

The conference emphasized the importance of integrating palliative care into all phases of a patient's medical care—whether it be critical care, pediatrics, or oncology. Dr. Randy Curtis, for example, emphasized how important addressing palliative and end-of-life care tenets are important in ICUs since less than 5% of patients in the ICU can participate in decisions about withholding treatment. Most of his communication occurs with families and loved ones, and if they (families and loved ones) were aware of patients' preferences for treatment decisions at the end-of life, this would be more helpful to quality end-of-life care for many people.

Many of the speakers addressed not only the importance of research in palliative and end-of-life care, but centered on patient and family involvement. Dr. Pamela Hinds of Children's National Medical Center presented on research she has been involved in about including children and their parents in the transition from curative to end-of-life care. She emphasized how important it is to include children and hear their voices and wishes in palliative and end-of-life care. Dr. Curtis also reminded the audience that it is important to affirm non-abandonment with patients and families at the end-of life.

I also spoke with some of the winners of the NINR research awards. Dr. Debra Parker Oliver's NINR funded research has looked at the use of video conferencing hospice patients and families into IDT meetings. Dr. Oliver's research project, ACTIVE (Assessing Caregivers for Team Intervention via Video Encounters), project proposes to strengthen hospice care for patients by enabling patient/family participation in hospice interdisciplinary teams through use of video conferencing. The intervention uses either videophone technology or secure Internet video conferencing to connect a hospice family virtually with the hospice staff as they meet to discuss the patients care. Preliminary results have been very positive and patients and families appreciate and benefit from the inclusion with hospice interdisciplinary team meetings.

Read more from The Oncology Report.

Paying Tribute to Elisabeth Kübler-Ross

Our upcoming program, Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief, pays homage to the enormous contributions made by Elisabeth Kübler-Ross with the 1969 publication of her epochal book, On Death and Dying. Her “5-stages” model of dying, later adapted for grief, raised our collective consciousness as a result of her discussions with patients approaching end of life. However, over time, advances in medical science have changed the way people die, or, as some might suggest, how we live longer with death.

For example, in a talk to the American Association for the Advancement of Science earlier this year, world renown researcher Anthony Fauci, MD, director of the National Institute of Allergy & Infectious Disease, cited how AIDS – once synonymous with certain death in less than a year – is now a manageable disease.

“When I started to take care of (AIDS) patients myself on the NIH ward in the summer and fall of 1981, if someone came into my clinic who was sick, they would have advanced disease, because unlike now – when you get an HIV test you come in, you could be very early – they all came in very sick. The median survival was 27 weeks. If the same patient, now… in 2011, comes into my clinic who was recently infected with HIV and I start them on the triple combination of therapy, you can mathematically model that they will live an additional 52 years.”

It stands to reason that when we die differently, we grieve differently, so in much the same way, bereavement specialists continue to develop new understandings and models to support those who have experienced loss.

Join HFA, beginning November 10, 2011, and challenge what you’ve learned about death, dying, and bereavement. What do you know about the latest thinking on death, dying and grief? What’s wrong with stage models? Is grief counseling helpful or harmful? Have dying and grieving changed with technological advances?

Register your organization today.

On Models of Grief

Saturday, the HFA team wrapped up a busy week of interviews across the country for Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief with Robert Neimeyer, PhD, psychology professor at the University of Memphis. Dr. Neimeyer has conducted research and written extensively on the subject.

For this program, which examines the latest thinking on death, dying and grief, Dr. Neimeyer was asked about the limits of Kübler-Ross’ “5-stages” model.

“[it is] a model that is not entirely wrong. It tells us more than a little, but less than much. What research teaches us is that the path through grieving is much more varied than that and that the contexts of grieving affect how people engage that journey.”

Dr. Neimeyer also shared his take on why the Kübler-Ross model remains popular despite these drawbacks, and also ponders,

“There’s the question of why we need a model in the first place and my response is: we don’t . . . we need many models. We need to have many windows through which we can look at this experience of grieving. Recognizing that each will afford a somewhat different view.”

Want to hear more? Register for the program by September 14^th for discount pricing!

Although this road trip is over, we’re far from done! We have more interviews to conduct, stories to tell, book chapters to polish, panelists to share their expertise and experience and, finally, DVDs of the completed program to distribute to our host organizations across the country. If your nonprofit, healthcare provider, college or university isn’t among them, register today to share this interesting and informative program with your community.

Evolving Models of Grief

We're crisscrossing the country this week delving into current theoretical perspectives on death, dying, and grief for our upcoming program, Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief. Yesterday, we met with with J. William Worden, PhD, ABPP, originator of the task model of grieving.

Dr. Worden discussed the role of the grief professional and whether every person who experiences a loss, needs professional support, and what that support should look like. He stated,

"Most people don't need any kind of intervention with their grief, they do very well. . . but there are some people who do need some help, and they're often people who don't have a good support system in their life and so they come to those of us who do this kind of work for some help but I think it's important not to assume that everybody is going to need our help. But if we are going to give help than let's have a model that's going to inform not only what's happening to our patients, but also inform the kinds of interventions that we do."

Dr. Worden also discussed how the role of palliative care has changed the way people are dying, and that this change may warrant different models of grief to accompany this different way of experiencing the dying process.

Are you a hospice, bereavement, or end-of-life care professional? Hear more from Dr. Worden by registering your organization to HFA’s important program in your community.

Grieving in the Internet Age

We’re continuing our interviews for November’s upcoming New Perspectives program. Today Spence Levine is meeting with J. William Worden, PhD, renown as the originator of the “task” model of grieving, but more on that later.

Yesterday, the team was in Palm Desert, CA with Pamela Gabbay, MA, FT, Program Director of the Mourning Star Center, a peer-based support program for children, teens, and their families. Among the many subjects they discussed for Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief, they touched on the intersection of grief and social networking, and how the advent of the internet has impacted the way people grieve. Said Gabbay,

“The internet is changing the way people grieve in that they’re able to reach out to so many more people than they could traditionally face-to-face or using the telephone. Now a griever can reach out to different subsets, for example, the young widows, or for example, a teen can go on Facebook or mySpace and can immediately post their pain and get immediate responses. I also think that the big difference is that the internet is open 24 hours. So for a lot of grieving people, they suffer from insomnia, so at 3am, you can go online and most likely find someone, somewhere, who’s chatting in a grief support group of some kind and get immediate feedback. At minimum at 3am you can find a lot of websites that talk about what’s normal. That's very different than generations past.”

They go on to talk about what all that information (as well as misinformation) means for the grief professional providing support. This is just one topic that will be discussed during the program, available beginning November 10, 2011. Register your organization to host the program in your community today.

Elisabeth Kübler-Ross: Examining Her Impact

The HFA team met with Charles A. Corr, PhD yesterday in St. Petersburg, FL in preparation for November’s Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief program. Dr. Corr, a frequent contributor to HFA’s Journeys monthly bereavement newsletter and former chairperson of the International Work Group on Death, Dying and Bereavement, discussed the work of Elisabeth Kübler-Ross and her impact on end-of-life care.

On discussing how hospice organizations assist families experiencing the loss of a loved one, Dr. Corr stated, “Good hospice programs will tell you that bereavement care doesn’t begin with the death of the patient, it begins with the admission. That is to say, that you start caring for the family as survivors-to-be, as soon as they present themselves to you.” Later in the interview he described what this can mean for the family. “If you can do good anticipatory grief work, if you can help people with their bereavement needs prior to the death, you can improve the quality of their bereavement after the death.”

Today we’re meeting with a Suncoast Hospice volunteer who is now a home care patient. Tomorrow we’ll be at the Mourning Star Center in Palm Desert, CA interviewing its director, Pamela Gabbay on children’s grief.

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HFA’s upcoming New Perspectives educational program, available beginning November 10, 2011, explores the most current theoretical perspectives on death, dying, and grief, emphasizing areas where understandings have been challenged and developed since the 1969 publication of Kübler-Ross’ epochal work, On Death and Dying. Register your organization for the program today!

Hospice Medicare Payment Changes for FY2012

See the July 29, 2011 press release from the Centers for Medicare & Medicaid Services, in part:

Hospices serving people with Medicare will see a 2.5 percent increase in their Medicare payments for fiscal year (FY) 2012, according to a final regulation released today by the Centers for Medicare & Medicaid Services (CMS). Hospices are also called upon to begin reporting on the quality of care received by Medicare patients, as a result of this final regulation.

The estimated hospice payments are the net result of a 3.0 percent increase in the “hospital market basket,” an indicator of industry-related price increases, offset by an estimated 0.5 percent decrease in payments to hospices due to updated wage index data and the third year of CMS’ seven-year phase-out of a wage index budget neutrality adjustment factor (BNAF).

In this final rule, CMS will:

• Change the way it counts hospice patients for the 2012 cap accounting year and beyond. The final policy for counting the number of Medicare hospice beneficiaries in care for a given cap year calculates the cap based on the number of days of care the patient received in that cap year for each hospice. This rule also finalized that the new counting method be applied to past cap years in certain instances.
• Allow hospice providers who do not want a change in their patient counting method to elect to continue using the current method.
• Allow any hospice physician to perform the face-to-face encounter regardless of whether that same physician recertifies the patient’s terminal illness and composes the recertification narrative.
• Implement a hospice quality reporting program, which includes a timeframe for reporting, as required by section 3004 of the Affordable Care Act. The measures that are being adopted in this final rule for the FY 2014 program are one measure endorsed by the National Quality Forum related to pain management and one structural measure that assesses whether a hospice administers a Quality Assessment and Performance Improvement (QAPI) program that contains at least three indicators related to patient care.

Study Shows Hospice Improves Care for Dementia Patients, and Their Families

A study in the Journal of the American Geriatrics Society shows patients dying of dementia in nursing homes experienced improved care, and so did their families. Of 538 family members of patients who died of dementia, those whose loved ones received hospice care “were 51 percent less likely to report unmet needs and concerns with quality of care. They were 49 percent less likely to report an unmet need for management of pain. They were 50 percent less likely to have wanted more emotional support before their loved one's death. They rated the peacefulness of dying and the quality of dying more positively than families whose loved ones did not receive hospice care,” according to a press release from Brown University. The National Institute of Aging funded the research.