Spiritual Meaning-Making at the End of Life

Dr. Kenneth J. Doka, PhD, mDiv, has been a leader in the field of grief and bereavement for many years. In addition to his international work on the subject, he is also an ordained Lutheran minister. In a recent interview, Dr. Doka discussed the places where end-of-life care and spirituality intersect, and both the opportunities and challenges that that perspective provides. He notes that, "When spirituality is defined broadly, it can be an important component of how one makes sense about what is happening at the end of life, and bring meaning to the life that someone has lived."

Dr. Doka will be a panelist on HFA's upcoming 2011 educational program, Spirituality and End-of-Life Care.

Early Registration for Spirituality and End-of-Life Care

It's Not Too Late!

Early Registration for organizations to host Hospice Foundation of America's 18th Annual Living with Grief^® educational program, Spirituality and End-of-Life Care, closes New Year's Eve.

Available on DVD, the 2 1/2 hour program can be shown according to your schedule beginning on April 13, 2011. The program will also be available at 1:30 p.m. Eastern time on April 13 as a webcast for registered sites. Learn more about the program or find a site to watch.

Registration includes:

• one full-length DVD (2.5 hours)
• a detailed Site Coordinator's Manual
• 50 printed Program Guides (with a tip & resource sheet included)
• access to a media kit to help you publicize the event in your area
• additional useful program materials

HFA is also offering an optional Bonus Package this year:

• Registration for Spirituality and End-of-Life Care, including all materials as outlined above
• Access to three additional webinar programs - Accessible live on May 11, June 8 and July 13, and archived for an entire year after the original live air dates, that will address portions of the program in greater depth (90 min each)
• Free CE credits for professionals (for the webinar series only) for the first week after each live start date (only $5/participant after the first week.)

Save on CE fees!
Pass this information along to another organization that may want to present this highly-valued educational program. If they haven't hosted an HFA Living with Grief^® site in the last 3 years and they tell us they are registering because you suggested it, we'll provide both organizations (their and yours) a 20% discount on CE credit fees for all attendees.

Sponsored By:
Foundation for End-of-Life Care

In Cooperation With:
Dignity Memorial Funeral Providers
National Association of Social Workers

Coping with Cancer at the End of Life

HFA's newest online tutorial focuses on "Coping with Cancer at the End of Life." When cancer treatment becomes ineffective, patients and families face highly emotional and very difficult decisions. This program discusses the impact that terminal cancer has on both the person with cancer and those closest to him or her. Free Continuing Education Credits (CEs) are available for this program and others at the Hospice Information Center.

Hospice Foundation of America's Hospice Information Center offers a range of online resources for families, friends and professionals. This centralized resource is funded by the Centers for Medicare & Medicaid Services (CMS) and can be found on HFA's website at http://www.hospicefoundation.org/infocenter.

Cultural Perspectives - Caring for the Dead

The New York Times ran a piece this past weekend about the revival of groups of Jewish volunteers tending to the dead.

The Jewish protocol for tending to the dead governs almost every interaction between the living and the deceased from the moment of death until burial. The ritual, which has been part of religious law for two millenniums, mandates the protection of the physical and spiritual remains.

But for many decades, most Jews in the United States have lost touch with those protocols — if they have ever heard of them — in favor of conventional funeral home services that replace volunteers with professionals who, by their nature, skip the more metaphysical and personal elements of the process.

Now, a movement to restore lost tradition has motivated a new generation of Jewish volunteers to learn a set of skills that was common knowledge for many of their great-grandparents: the rituals of bathing, dressing and watching over the bodies of neighbors and friends who have died.

These groups, known as Chevra Kadisha were discussed in HFA's 2009 book, Living with Grief: Diversity and End-of-Life Care in a sidebar on Orthodox and Hasidic Jewish practices by Rabbi Barry M. Kinzbrunner. You can read the sidebar and table of contents here.

Emergency Departments and Palliative Care

A study published in the Annals of Emergency Medicine notes that emergency department physicians and nurses need more training to handle the needs of a growing number of patients coming to the hospital for end-of-life care.

The study was based on 1,000 hours of observation and interviews with healthcare professionals, patients, and family members at the Centre for Social Research in Health and Healthcare at the University of Nottingham, England. From the press release:

"Patients and their families receive a lot of attention and support in the emergency department when there is an unexpected acute medical illness or a sudden, often traumatic event that results in death," said lead study author Dr. Cara Bailey of the College of Medical and Dental Sciences at the University of Birmingham in Birmingham, England. "While the emergency department is not designed for end-of-life care, the reality is that many patients in this category go there for help, sometimes not realizing this is the end. Emergency resources are focused on saving lives, which tends to shortchange the patients who have terminal illnesses."

Joanne Kenen also writes in the Annals about palliative care in emergency departments in the United States.

Although palliative care training is not de rigueur in emergency medicine residencies, a smattering of programs is incorporating aspects in disparate settings. At Stanford, Garrett Chan, RN, PhD, teaches emergency residents about breaking bad news, particularly in pediatrics. He also has a particular interest in addressing shortness of breath. At Northwestern, all residents now spend a full month learning about palliative care, including a field trip to a long-term care facility, the other side of their patients' revolving door. (Dr. Gisondi and colleagues have developed a version of the EPEC-EM curriculum, a mix of didactic and online self-learning modules, for use in other institutions, which has been accepted for publication in the Western Journal of Emergency Medicine.) In Detroit, for the first 2 years of his residency, Dr. Desai absorbed lessons about palliative care from Dr. Zalenski. In his third year, he spent a week in the palliative care inpatient unit and with the palliative care consultation service, an experience that used to be elective and is now mandatory.

That experience changed not only how Dr. Desai thinks about patients but also how he talks to them, and about them. He's less likely to ask the family of one of his nursing home “revolving door” patients, “Would you like us to help her breathe?” and more likely to describe, precisely but not unkindly, how a sick frail old person will feel when “I shove this large tube down her throat.” He refers to patients by their first name and helps families come to understand that o matter what switches or buttons he pushes, he can't undo 20 years of decline. “She won't be the Mary you remembered,” he'll say.

Worldwide Candle Lighting This Sunday, December 12, 2010

The Compassionate Friends 14th Annual Worldwide Candle Lighting to unite grieving families who have experienced the loss of a child at any age will be held this Sunday, December 12 at 7pm local time for one hour.

Last year, nearly 530 service were held in all 50 states and Washington, DC and Puerto Rico, as well as 15 additional countries.

"Our organization has united with sister groups, funeral homes, churches, hospitals, hospices, and community groups around the world to celebrate this annual day of remembrance," says TCF Executive Director Patricia Loder. "Over the past few years we've been joined by chapters from MISS, MADD, Parents of Murdered Children, SIDS Network, Gilda's Club, Twinless Twins, and BPUSA. This year we anticipate welcoming more bereaved families whether through services open to the public, small gatherings in the home, or individuals lighting candles."

For more information, visit http://www.compassionatefriends.org or call the national office at 877-969-0010. TCF's Facebook Page with more than 14,000 members can be reached through the organization's website.

Language Matters: Do Not Resuscitate vs Allow Natural Death

Paula Span writes in the New Old Age blog about an interest among some health care professionals in changing D.N.R. (do not resuscitate) orders to something more palatable to family members, such as A.N.D. (allow natural death.)

Let’s imagine an end-of-life scenario. Your ailing and elderly parent has been admitted to the hospital yet again with a condition she’s not going to recover from. The medical team asks what they should do if her heart stops. She’s always said she didn’t want to die “hooked up to a bunch of machines,” but you’ve never really explored the details. Besides, though she has a terminal illness, no one has yet mentioned the d-word.

The key question: Should your parent have a D.N.R. order, meaning “do not resuscitate”?

Before you answer, another key question: Would that decision be any clearer, easier or less painful if the order was instead called A.N.D., for “allow natural death”?

Some health care professionals think it might be. Even if the staff’s subsequent actions were exactly the same, if in either case a patient would receive comfort care to relieve pain but wouldn’t undergo cardiopulmonary resuscitation, nomenclature might make a difference.

We've posted about this debate before, as it was raised in USA Today and a magazine for practical nurses. The idea has been discussed on the GeriPal blog, and geriatrician Eric Widera responds to Span's post here.

Be sure to read the comments on the New Old Age blog.

What Do Hospice Nurses Do?

A hospice nurse cares for all types of patients; young, old, pleasant, belligerent, educated, and uninformed. The Registered Nurse (RN), often called the Case Manager, provides oversight to the patient’s care while working collaboratively with all members of the hospice team. Hospice nurses see an opportunity to help people meet their end-of-life goals, by providing compassionate, highly-skilled care. Hospice nurses have extensive knowledge in symptom management, a team approach to end-of-life care, federal and state regulations, and hands-on patient care.

A hospice RN always works collaboratively with all members of the hospice team. The hospice RN is trained to assess the patient’s overall condition through dialogue, a physical exam, and reviewing past treatments and medication. The RN is usually the first person who visits a potential hospice patient, and continues to visit the home as often as necessary to assess the patient’s status and address issues as they develop.

Discussion regarding past medical history, including previous attempts to manage symptoms, is a significant part of the interaction between the nurse and the patient. Part of a hospice nurse’s role is not only to ensure that a patient’s symptoms are controlled, but that the patient feels in control. The hospice nurse develops a trusting relationship, so the patient and family knows that the hospice nurse will be present and effective throughout the experience.

Utilizing extensive knowledge and skills, the nurse teaches patients and caregivers how to administer correct doses of the medications ordered by the physician and what to watch for in terms of effectiveness or adverse reactions. The RN reports those findings to the physician, obtains orders for all care and treatments, and evaluates the effectiveness of the medications and treatments.

The RN also educates the patient/family about what to expect as the disease progresses. Often just knowing what might happen can ease the mind of a tired caregiver or an anxious patient.  The RN provides pertinent information, such as nutritional requirements at the end of life, care of the bedbound person, wound care if necessary, and ways to ease suffering. This information includes both the use of medications as well as other suggestions as simple as the power of a soothing touch or peaceful atmosphere, ways that can be as equally effective in managing pain and bringing relief.

If the patient is not in hospice at home, the hospice RN collaborates with facility staff in Nursing Homes, Assisted Living Communities and hospitals. In addition to supporting the family, the hospice nurse can provide guidance and emotional support to staff.

All core members of the interdisciplinary team, including the RN, gather at least every 15 days to discuss areas of concern or achievements in managing the patient and family’s physical, emotional and spiritual issues. These meetings support not only the family and patient goals, but provide an essential time for the staff to support each other in this difficult work.

An RN is not the only type of nurse that can be found on a hospice team. A Licensed Professional Nurse (LPN) may also provide care, under the direct supervision of an RN. Additional personal care may be provided by a Certified Nurse Assistant (CNA), who also operates under the supervision of the hospice nurse. Hospice nurses, RNs and LPNs, can become certified in hospice and palliative care, a specialty achieved through hard work and dedication.

Hospice nurses are compassionate, skilled, and comfortable being surrounded by the dying. Their idea of a successful day is to have a much loved patient die peacefully, symptom free and surrounded by caregivers that feel a sense of accomplishment in providing the best care they could. A hospice nurse’s mission comes with many tangible and intangible rewards that make it all worthwhile.

Jennifer Carlson, RN, CHPN
HFA Operations Consultant

Cultural Competency and End-of-Life Care

The National Cancer Institute (NCI) reports on providing culturally competent cancer care and the work of Dr. Joe Harford, director of NCI’s Office of International Affairs and the Middle East Cancer Consortium (MECC), a partnership between the United States and the health ministries of Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey.

Much of the initial focus in the MECC palliative care project has been on end-of-life care, because that’s where the need is greatest. But discussions of death and dying, and even the mention of cancer, are still taboo in many countries in the Middle East. And, noted Dr. Harford, “the taboos against telling a child that he or she is dying are even stronger than about talking to an older person who is dying.”

Despite the taboos, people are receptive to ideas about improving end-of-life care for their loved ones. “Oftentimes it’s not really a cultural barrier, it’s simply a barrier of education and understanding,” Dr. Harford explained.

HFA’s 2009 education program focused on Diversity and End-of-Life Care. View resources from that program here.

Grant Awarded to Create Palliative Care Research Cooperative Group

The National Institutes of Health/National Institute for Nursing Research has awarded a $7.1 million grant to Duke University and the University of Colorado School of Medicine to create a palliative care research cooperative group. The consortium will conduct studies on better ways to relieve suffering improve quality of life for patients at the end-of-life, and those with life-limiting illnesses. From the press release:

“Palliative care research has been hampered by a lack of resources and standard methodologies,” says Amy Abernethy, MD, associate professor of medicine at Duke and co-leader of cooperative group. “This award will support the development of a network that will be able to handle complex, multi-site clinical trials and research projects that can yield robust, reproducible results.”

Jean Kutner, MD, professor of medicine at the University of Colorado and group co-leader, says a more organized and robust infrastructure will help define best practices in palliative medicine and will support high quality, clinically relevant research that will lead to better patient care.

Both led the development of the group’s first clinical trial, opening in early 2011, a study designed to determine if discontinuing cholesterol-lowering medications when patients near the end of life alters their survival or quality of life or leads to any adverse consequences.