The Acronyms of End-of-Life Care Discussed

In March, we wrote about a USA TODAY article that discussed whether changing the language health professionals use to ask about end-of-life care preferences might affect the answer of patients and their families. Specifically, whether the phrase “allow natural death” was better received than “do not resuscitate.”

Last week’s ADVANCE for LPNs (a magazine for practical nurses) featured an editorial by Martha Chambers, MSN, RN, CHPN, which discussed this distinction and included another acronym, ACT (aggressive comfort treatment.)

DNR is often viewed in a negative way. But DNR does not mean "do not treat." It does not mean "abandon the patient, nothing more can be done" and it does not mean "give up hope."

A DNR order does not give permission to end someone's life; it gives direction not to start CPR if a person dies.

An AND order recognizes the patient is dying and allows for patient autonomy, and supports aggressive symptom management with the goal of comfort for patient and family.

Establishing a palliative-care supportive treatment plan assures symptoms are anticipated, prevented and managed with a team approach that includes the patient and family. Withdrawal of life-sustaining medical treatment and unnecessary procedures allows death to occur naturally in an as comfortable and stress-free environment as possible.

No two patients or family units are the same, and developing an aggressive comfort treatment (ACT) plan is often a challenge. The nursing team only has one chance to get it right.

Most people are not afraid of dying as much as they are afraid of dying in pain, distress and with a lack of control. The goal of ACT is a peaceful end, with comfort and dignity.

In 'ACT': Taking a Positive Approach to End-of-Life Care, Patricia Murphy defines ACT as "a concept that frees yourself of the constraints of the care-oriented medical model," allowing you to "better focus on caring for the whole person."²

How a Hospice Nurse is Born

Teresa Yarbrough, a registered nurse at Alive Hospice in Nashville, talks about how her early experiences shaped her desire to become a hospice nurse.

Over twenty years later, I met a woman who was a hospice nurse. I curiously asked her to tell me what she did exactly. What did her work look like? She began to describe to me how she cared for patients during their tender transition time of dying. As I listened, I was instantaneously transported back to my Grandpa’s bedside the night I stayed with him very near the time of his death. The sacredness of that time had left an indelible imprint on my life. Just as quickly as that memory came flooding into my heart and mind, an intense desire to pursue hospice nursing as a career was birthed in me.

Also read “A Gentle Death: Five Months with Hospice”, written by the wife of a hospice patient after his death in 2002. Barbara O’Neil Ross’ husband, John, spent over five months in the care of Hospice of Cambridge in MA. Barbara’s nine-part series captures the essence of hospice care and the various roles the hospice team can play in the lives of the dying and their loved ones.

Volunteers Sewing Memories

Here is another local article (Central PA) about hospice volunteers who sew memory bears for family members of a patient who has died.

Mary Kisner has lived in the State College area almost her entire life, but her work in curriculum development at Penn State and then as a consultant in work force education has kept her on the road for much of her adult life.

Now that she’s retired, she is meeting her neighbors in Boalsburg, rediscovering her home economic skills from the 1970s and volunteering for some people she will never meet.

As a member of the local chapter of the American Sewing Guild the 62-year-old makes “memory bears” for the families of deceased hospice clients of Medi Home Health and Hospice.

The bears are stitched together with fabric that was once a favorite garment, and families are offered the bears as keepsakes, a way to grieve and remember.

Learn about how other ways hospices offer memory bears, and watch a clip from a volunteer and family recipient.

Public Grief/Private Grief

This week the world has focused on public loss. The death of Neda in the Iranian protests, the devastation in Washington, D.C. as two trains inexplicably collided and killed nine people, and the deaths of two long-time entertainment favorites, Ed McMahon and Farrah Fawcett. These notable deaths, covered extensively by the media, were soon overshadowed by a media circus following the sudden death of pop icon Michael Jackson. Throughout the world, there has been an outpouring of grief as people mourn these seemingly larger-than-life losses.

As the world focuses on those very public deaths, it is easy to lose sight of the private tragedies that beset us all. Our own losses seem minimized by the constant “Have you heard?” and later, the millions of mourners expressing their collective public grief on the streets. With so much focus on these losses, there seems little interest in our everyday grief.

I experienced this after 9/11. My 94-year-old aunt died peacefully in the first few days after the September 11 terrorist attacks. She was buried just as the funerals for the victims of that horrendous assault were beginning. The clergyman who presided at her funeral felt compelled to compare her death to those who died in the attack. Her death had been different. It had been peaceful and expected. Her life had not been tragically cut off – she had lived to see great-grandchildren. But then he continued. Your grief should not be like the others, you could take comfort in comparing your loss to the loss around you.

This is always a dangerous and troubling idea – that losses should be compared across some scale of pain. It is dangerous and troubling for two reasons. First it minimizes the horrendous losses of others – making them points on a ruler of horror. And second, it seems to invalidate the grief of all whose losses seem less public or noteworthy than others.

To her family, the loss of my aunt, the matriarch, the glue that held the family together, this was not a loss to minimize. While they could take comfort from her long life and peaceful death, they mourned her loss no less.

Rabbi Earl Grollman once said “the worse loss is the one you are experiencing now”. There is great truth in that. We need to remember that the deaths we grieve, even when they come in the midst of public or catastrophic loss. It is no disservice to those whose deaths are catastrophic, early, or very public, to mourn those very personal tragedies. Rather, it reinforces the inherent worth of every individual, regardless of age or circumstances of death, to be grieved by those who loved them.

We also may need to acknowledge that sometimes too these public deaths may bring to the surface earlier losses. These public deaths may remind and reinforce earlier losses – making us miss, for example, the spouse we watched the Johnny Carson show with, a sibling who sang Jackson Five tunes, or a friend, who like Farrah Fawcett, died after several years of illness.

We also can recognize that our public and private grief may be intermingled. We can empathize with the families in Iran and Washington, D.C. We can acknowledge our own appreciation and connection to celebrities we may never have met. Yet, we may also, honorably and necessarily grieve the personal tragedies that we continue to encounter as we journey through life.

Kenneth J. Doka

HFA Webinar Available - Supporting People with Intellectual Disabilities through Illness, Grief and Loss

with Claire Lavin, PhD and Kenneth J. Doka, PhD

Tuesday September 15, 2009
1:00pm - 2:00pm ET

Continuing Education Available for Professionals!

A valuable educational offering for individuals or organizations, with CEs included--in an easy-to-access on-line format! One hour of continuing education is available for social workers, nurses and counselors.

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When the topic of diversity is considered, many think of ethnicity, gender, or religious affiliation. Yet there are other cultures or identities that may greatly influence how one copes with, and is supported through illness, death and grief. Dr. Claire Lavin will discuss the differences, and the similarities, in how persons with intellectual disabilities may respond to the illness and death of a loved one. And as societal and medical changes have occurred, persons with intellectual disabilities are living longer and therefore facing their own illness and dying. Dr. Lavin will share her experience about some of the challenges that all caregivers face, and the need for more education and partnership to better serve this population.

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At the end of the program, participants will be able to:

1. Understand the definition of intellectual disabilities and examine some statistics about this population;
2. Discuss some of the common misconceptions about this population with regards to grief and loss;
3. Discuss strategies to use in helping persons with intellectual disabilities cope with grief and loss;
4. Discuss how hospice professionals and disability caregivers can support persons with intellectual disabilities who are facing their own end-of-life situations; and
5. Devise specific steps to take to ensure that adults with intellectual disabilities have their wishes expressed and respected at the end of life.

Register Now! Space is limited.

• Individual registration: $25 per registration, 1 CE certificate will be granted
• Organization registration: $75 per registration, unlimited CEs will be available to your viewers
• Bulk registration: Purchase 5 or more registrations and get 10% off the price of individual registrations, 1 CE per registration will be granted (Use this option if you want individuals in your organization to access from their personal computers)

Learn more about Hospice Foundation of America's Webinar here.

Medicare Hospice Benefit

Today’s New England Journal of Medicine included a short article that describes the current Medicare hospice benefit. Growth in the number of patients utilizing hospice, the increase in the number of hospice organization, and proposed changes to the Medicare hospice benefit by the Medicare Payment Advisory Commission (MedPAC) are also discussed.

End of Life Care Notes: Around the United States

• A new website was launched in May 2009 to assist Texans in making end-of-life care plans.
  

  An Internet site is making it easier for Texans to do their "end-of-life planning."
  
  Craig Klugman, director of the Center for Medical Humanities and Ethics at The University of Texas, has created a site where Texas residents can find the forms needed to make a living will - also known as an advance directive.
  
  The interactive site walks people through the process and decodes the "legalese" used on the forms, according to the University of Texas Health Science Center.



• Hawaii is taking steps to establish POLST documents in the state. The governor has until July 15 to sign a new bill.
  

  The recently passed legislation, House Bill 1379, establishes procedures for obtaining and using "physician orders for life-sustaining treatment," or POLST, documents that clearly state the patient's treatment directives in emergencies and other treatment situations.



• Volunteers of America in Minnesota is launching a program to have volunteers serve as elder advocates for those without family or close friends to assist them.
  

  They are called "elder orphans" -- perhaps 8,000 or so older Minnesotans in fragile health who have outlived their families, close friends and even their ability to make important medical or financial decisions.
  
  . . .
  
  In a program believed the first of its kind, Bornong's social service agency, Volunteers of America (VOA), is seeking out people like Furman, helping them fill out health-care instructions, then working to find advocates for them.



• This New York Times article talks about a night care program for Alzheimer's patients at the Hebrew Home at Riverdale in the northern Bronx, New York. There is an accompanying slide show and video.
  

  While there are countless day care programs for the nation’s estimated 5.3 million Alzheimer’s patients, some experts believe that ElderServe at Night, which began a decade ago, is the only one of its kind in the country.
  
  Participants are fetched from their homes by vans and spend 7 p.m. to 7 a.m. painting, potting plants, dancing and talking — or, for those immobilized by their disease, relaxing amid music, massage and twinkling lights. The patients rest as they need, for a few minutes or a few hours, and return home the next morning fed, showered and, usually, tuckered out.

Hospice Notes: New Social Work Certificate, More Hospice Radio, NHPCO Contest

• The National Association of Social Workers (NASW) has partnered with the National Hospice and Palliative Care Organization (NHPCO) to develop a baccalaureate level credential for social workers who specialize in hospice and palliative care. The Certified Hospice and Palliative Social Worker (CHP-SW) designation is now available for bachelor’s social workers with experience and expertise in end-of-life issues for patients and their caregivers. Learn more.


• Hospice Radio will be airing a show today on "Medical Ethics and the “Concept of a Good Death" at 2 p.m. ET. The show’s guests are Dr. Harry Moody from the AARP, author of 'The Soul of Bioethics' and 'Human Values in Aging' newsletters along with Dr.Pamela J. Grace, Associate Professor - Adult Health & Ethics at Boston College, William F. Connell School of Nursing. Topics will be drawn from the discipline of medical ethics and will explore the possible goals for people caring for aged parents, people who act as health care guardians, and concerns for the general public considering options regarding their own end-of-life care. A second half will air on Tuesday, June 23 at 2 p.m. ET.


• NHPCO is conducting a Photography, Writing, and Film Contest. Submissions should be professional or volunteer development films/videos, and all entries are due by Friday, July 17, 2009.

Supporting Grieving Special Needs Children

We seldom see articles focused on supporting grieving children with developmental and/or intellectual disabilities. Carol A. Ranney, a single adoptive parent of seven children, writes for Examiner.com’s Philadelphia site. Two of her sons have died, one at age 13 in 1996 and one at age 31 in 2007. Ranney shares the experience of helping her son, who has cerebral palsy and is nonverbal, grieve the loss of his siblings.

When there is a death in the family or in the peer group of a special needs child or adult, that person is very often forgotten in the planning of the service, the mourning rituals, funeral home visitation, and the other common aspects of grieving and mourning the death of someone loved. Just as children are sometimes left out of these important experiences because “they’re too young,” they won’t/don’t understand,” or “it would be too upsetting,” special needs children and adults are also frequently forgotten mourners.

Contrary to what the general public may think, people of all ages who have exceptional needs still have their emotions intact, are generally aware of the people around them, and are also aware of the absence of these important people. Even though the child or adult may not be verbal, be assured that they have their thoughts, their memories, their questions, and their sorrow. If they are able to love, they are able to grieve, and if they are able to grieve, they need to mourn and to heal.

Children with cerebral palsy, like the one mentioned in the article above, have a range of developmental disabilities and also may have intellectual disabilities. When professionals consider how to support diverse populations through illness, death and grief, those with developmental and/or intellectual disabilities should be included.

TV Series and Website Seeking Stories on End-of-Life Care

We wanted to share information about this project:

A new website and TV series is collecting first-person stories from patients, their families, loved ones, and health care professionals about how personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life.

The pilot episode will explore experiences that tested or challenged people’s beliefs about who decides when and how we die, and what role, if any, government and healthcare institutions should play in those decisions.

Visit the site and consider submitting a story. Also read a story by Sandra Clarke, CCRN, who began the No One Dies Alone program. We have posted about this program before, here and here.

Cancer and End-of-Life Care Initiative Announced

Hospice Foundation of America's Year 2010 Initiative, Cancer and End-of-Life Care, will feature our 17^th annual teleconference, to be broadcast on March 24, 2010. The program, shown at 1,000 sites in the United States and Canada, will address care options related to cancer diagnoses as well as loss and grief reactions for patients, families and professional caregivers. The teleconference will also examine psychosocial aspects of cancer, pain management, and ethical issues related to the disease. Moderated by Frank Sesno, the panel will include:

• Yvette Colon, PhD, MSW, Director of Education and Support, American Pain Foundation;


• Malene Davis, CHPN, MBA, President and CEO, Capital Hospice;


• Kenneth J. Doka, PhD, College of New Rochelle and Senior Consultant, HFA;


• Richard Payne, MD, Director, Duke Institute on Care at the End of Life;


• Sherry Schachter, PhD, FT, Director of Bereavement Services Calvary Hospital/Hospice;


• Brad Stuart, MD, Senior Medical Director, Sutter VNA & Hospice.

Each year, HFA produces a national teleconference, highlighting a different area of interest to health care professionals and other caregivers. This award-winning educational program is a live-via-satellite televised broadcast which is simultaneously "downlinked" to satellite dishes all over the country. In addition, an on-site session is part of the total teleconference program, providing opportunities for professional collaboration and peer support and networking. Many organizations co-host sites with other area groups to share resources, broaden audiences, and help develop a strong community network that otherwise might not exist. Three hours of Continuing Education Unit credits are available for a wide range of professions, including nurses, social workers, physicians, psychologists, licensed counselors, nursing home administrators, clergy, EMS personnel, EAP professionals, and funeral directors. Registration to host a site will open September 1.

African Americans and End-of-Life Care: A Special Report

The latest numbers show that in 2007, Black Americans accounted for just over 13 percent of the US population, but only nine percent of an overwhelmingly white-dominated hospice patient population.

Hospice Foundation of America has produced a DVD focusing on "African Americans and End-of-Life Care," which examines African-American attitudes about care at the end of life, offers explanations as to why this hospice disparity exists, and suggests practical ways to shrink the gap.

This rich and insightful Living with Grief special report is moderated by Frank Sesno and features Tawara D. Goode, MA, Director of the National Center for Cultural Competence; Wanda Henry-Jenkins, MHS, Manager of Bereavement Services at VITAS Innovative Hospice Care in Chicago's Northwest Program; Karla FC Holloway, PhD, a Duke University professor and author of Passed On: African American Mourning Stories; Richard Payne, MD, Director of the Duke Institute on Care at the End of Life; and LaFrance Williams, whose husband died in the care of hospice earlier this year.

The one-hour program includes a discussion of the long-held belief of African-Americans' mistrust towards the medical system, and the connections that might have to low hospice utilization; the influence of religion and spirituality in the lives of many African Americans, and its impact on end-of-life decision making; and issues of grief and bereavement particular to the African-American community. The DVD also highlights a program in Kansas City focusing on outreach to African Americans and offers practical advice about hospice outreach efforts. The program is now available for purchase. Continuing Education credits for social workers, nurses and counselors will be available for a small, additional fee in September.

Please note: Black Americans is a category used in US Census data, which includes African Americans. NHPCO uses Black/African Americans.

Local News Reports on End of Life Conversations

Two recent local reports on end-of-life care discussions feature video segments. First, New England Cable News talks with VNA Care Network & Hospice about hospice and the difficulty in starting a conversation about end-of-life care. The report also relates to a recent study by Harvard Medical School about delays in these conversations between doctors and their patients. Another report out of Washington, D.C. interviews the husband of a woman who was diagnosed with terminal lung cancer and received care at Georgetown University Hospital, where nurses were surveyed recently about their perceptions of the quality of end-of-life care provided at the hospital.

"One of the nurses said to my daughter, 'You know, it's really an honor for us to take care of your mother,' and for my daughter, it really meant a tremendous, it really meant a lot," Robert said.

Less than two months after his beloved Sarah's death, Robert visits with her nurses.

"A great part of it is not only the pills and the medicine, but it's the human relationship," Robert said.

They couldn't save her, but their care and kindness is helping a husband through the most difficult time in his life.

Story of a Hospice Volunteer

Here is a wonderful story of a volunteer with Alive Hospice.

Mrs. Lula Estes viewed the world through the eyes of an artist, immortalizing great beauty with brushstrokes and palettes of vibrant colors. She was a professional portrait artist who had a way with painting children, not to mention landscapes and water scenes.

The artist displayed her work in her home, and it was there that Alive Hospice volunteer Gretchen Sakkinen came into her life. On their first visit, Sakkinen was struck by the painter’s artistry and engaged her in a conversation about her work. Mrs. Estes “lit up” as they talked about painting, Sakkinen recalled, and offered to give her a lesson. On their next visit, Sakkinen brought a canvas and paints.

Selecting a portrait she had painted in years past, Mrs. Estes guided Sakkinen as she applied color to the blank canvas to reproduce the artist’s work in her own way. Becoming Mrs. Estes’ student was a special way Sakkinen could bring joy to the artist, who was no longer able to paint herself. Through Sakkinen, Mrs. Estes was again able to create in the medium that she so loved.

Learn more about volunteering and hospice.

Tune in to Hospice and Palliative Care Discussions

Two recent online radio programs discussed hospice and palliative care.

First, Viki Kind, a personal healthcare strategist, medical ethicist, and hospice volunteer interviewed Dr. Christian Sinclair on May 29 on her Kind Ethics Talk Radio Show. Dr. Sinclair is associate medical director at Kansas City Hospice & Palliative Care, writes for the Pallimed blog, and sits on the American Academy of Hospice and Palliative Medicine's Board of Directors. They discuss the challenges of end-of-life prognostication, including family expectations. He also talks about the difficulty doctors have discussing end-of-life care with their patients.

Second, Dr. Zoë A. Lewis, an internist and hospice and palliative care physician has started Hospice Radio, a one-hour interview-based program featuring topics and international experts in the fields of aging and end-of-life care. Her May 20 broadcast, “What is palliative care?” includes interviews with Judi Lund-Person from the National Hospice and Palliative Care Organization; Dr. Harry Moody, Director of Academic Affairs for AARP; and Jay Westbrook, RN, CHPN, the 2005 Visiting Faculty Scholar at Harvard Medical School’s Palliative Care Department. They discuss palliative care as a concentration of specialty care in the fields of nursing, social workand medicine and how palliative care can benefit patients and their families.

Hospice Spiritual Support Comes from Many Faiths

This blog post by a spiritual care worker at Victoria Hospice in British Columbia, Canada, addresses how being a Buddhist helps him approach patients with spiritual needs.

Co-workers speak of “our monk” when they mention my services to patients and their families. It’s one of the ways of inserting the S-word (spirituality) into the hospice discourse. We find that many people are cautious when it comes to being visited by someone with “chaplain” or “pastoral” on their name tag. For many, the R-word (religion) is problematic, unless they have an established faith practice. However, when faced with persistent pain, declining mobility, and impending death, a spiritual crisis can easily arise.

Being seen as “our monk,” and especially “our Buddhist monk” allows me to step through doors that might otherwise remain shut … actual doors (to patients’ rooms) and metaphoric doors (to deeply-felt fears, doubts, and hopes). It could be that "monk" is such a non-threatening term–it evokes images of ordinary men and women living extra-ordinary lives in the service of others.

Circle of Life Award Nominations Sought

The American Hospital Association is calling nominations for its Circle of Life Award, which honors innovative programs in palliative and end-of-life care. Organizations providing palliative care or end-of-life care in the United States are eligible for this award.

Applications are due August 9, 2009.

Palliative Care Ground Rounds is Up

The fifth edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up About.com's Palliative Care blog.

Clinical Practice Guidelines for Quality Palliative Care, Second Edition, Now Available

The National Consensus Project has released the second edition of its Clinical Practice Guidelines for Quality Palliative Care. The guidelines describe the core precepts and structures of clinical palliative care programs and were adopted by the National Quality Forum.

This new edition provides "real examples of how various organizations have used the Guidelines to operationalize optimal end-of-life care."

National Home Health and Hospice Survey Data Released

Last Friday the National Center for Health Statistics released data from its 2007 National Home and Hospice Care Survey on its website. A total of 3,377 interviews of aides working in agencies providing home health and/or hospice care were completed between September 2007 and April 2008.

Memorials of the Dead Take Many Forms

The Kansas City Star featured a short article in May on the various ways people memorialize their loved ones after their death. The accompanying slide show includes photographs of the tattoos, lockets, benches and other ways people have honored their family members and pets.

Videos Help People Plan for End of Life

TIME magazine featured a piece on study that appeared in the British Medical Journal that involved showing 65-year-olds a two-minute video of an elderly woman with dementia and asking what type of care they would like to receive if they were to develop advanced dementia. Those results were compared to subjects who only received a verbal description of the disease without the accompanying video.

Among the patients who received only the verbal narrative, 64% chose comfort care, 19% chose limited care and 14% chose life prolonging care (3% were uncertain). Among the patients who also saw the video, 86% chose comfort care, 9% chose limited care, 4% chose life prolonging care, and 1% was uncertain.

Perhaps more crucially, says the study's lead author Angelo Volandes of Massachusetts General Hospital, when participants were contacted six weeks later, only 6% of patients who saw the video had changed their preference for care, compared with 29% of those who did not see the video. People who saw the video also scored higher on health literacy tests, given by the researchers to judge knowledge of advanced dementia. "The results suggest that patients who watched the video had a better understanding of the disease and felt more secure in their decision. We felt those results were promising, as the goal for end-of-life decisions is to make sure [the patients] are informed," Volandes says.

End of Life Expert Faces Issues Personally

The Salt Lake Tribune includes an article about a University of Utah medical ethics professor who specializes in end-of-life care decisions whose husband recently had a serious biking accident. The article discusses the professor's personal confrontation with these issues and includes a multi-media component.

In one unexpected episode in City Creek Canyon on an ordinary November weekday, Battin's personal and professional lives collided.

She knew by heart the arguments for not resuscitating fatally injured patients. She had defended vigorously a person's right to be the final architect of his own death. Yet she also knew her husband well enough to believe he would want to live even if completely paralyzed. But what if he hadn't? Could she have signed a do-not-resuscitate order? Or worse, if he asked her to help him end his life, could she have done it?

Hopkins' life-altering accident on Nov. 14, Battin says, "has presented me more than an intellectual challenge to the views I've been defending over the years. It is a deeply personal, profoundly self-confronting challenge."