Day of the Dead, November 2

Elizabeth Uppman

A red and green striped elf cap. A stuffed lion. A toy drum. A tiny t-shirt with “Gabriel” written on it. Two rows of votive candles light up these things, giving the lion an extra sheen of fuzziness. Behind them, a photo of Gabriel—our best picture, with his rascally little crew cut and a gleam in his eye—stands like a backdrop.

Gabriel died eight years ago. For eight years I have created a Day of the Dead altar for him. The first couple of years, when November 2 rolled around, I had to talk myself into it. I would make myself a cup of tea, sit quietly, tell myself it was going to be okay. Then I would go to the wooden chest where we keep his things, yank it open, and pull everything out at once. I would sit on the floor in the middle of that shaggy pile of stuff—the toys I’d bought, the clothes I’d washed, all of it so familiar, all of it strange.

These last few years I haven’t had such a struggle. Gabriel’s toys aren’t toy-like to me anymore. They’ve become like the offering plate we pass to one another in church: ritualistic objects, parts of a ceremony.

The Day of the Dead is a Mexican holiday. I am not Mexican, but I lived there for five years with my Mexican husband. When we first moved there, I thought the custom of putting a dead person’s things on an altar was tokenistic and backwards, honoring the things rather than the person. Then my husband took me to city hall to view a display of altars for famous residents of our city. One, built for a well-loved teacher, consisted of terraced platforms rising in a pyramid nearly to the ceiling, with the dead man’s photo on top. Candles, marigold petals, and loaves of pan de muerto—bread of the dead—decorated the tiers. And here were the teacher’s spectacles, displayed in a leather case. They drew me in, the round lenses like two coins. I could picture them on the teacher’s desk, waiting for him like a servant—waiting still, it seemed to me, as if no one had told them the old man had died.

Every time I make an altar for Gabriel—every time I take his things and lay them next to one another—something makes me stop and look. The elf cap, the stuffed lion, and the candle seem to borrow from one another a heightened sense of importance, like objects in a still life. Gabriel wore that elf cap on his first Christmas Eve, in a shiny metal crib on the pediatric floor. The nurses brought him gifts at midnight, a bear and a play set. I remember how happy it made them to give him toys instead of the usual IV meds and breathing treatments.

I don’t know what happened to those gifts. I couldn’t keep everything—the wooden chest is only so big. But the elf cap, the lion, and the candle—these are enough. They hold so much inside of them.

Elizabeth Uppman

The Role of Hospice Chaplains

Paul Vitello wrote about the role hospice chaplains play in end-of-life care in this week’s New York Times. The reporter followed five chaplains around New York for several weeks, including a former Roman Catholic priest, a Protestant, and a Buddhist monk. There’s an audio slideshow that accompanies the article on the left-hand menu that highlights the important role chaplains can have at the end-of-life, for both patients and their families.

Spiritual counseling has always been an optional part of the service. But recently, the proportion of patients choosing to receive it, and the number of new chaplains entering the field to meet the need, have risen sharply.

Chaplain services in New York City have nearly doubled since 2004: About 65 percent of the city’s 4,000 hospice patients accept visits from chaplains today, compared with about 35 percent four years ago, according to the two major hospice providers, the Visiting Nurse Service of New York and Continuum Hospice Care.

Nationwide, a study released two weeks ago by the National Center for Health Statistics of the Centers for Disease Control set the proportion of patients accepting a chaplain’s care at 72 percent in one sampling, as compared with the 59 percent another group found in 2000.

The new demand has contributed to a steep rise in the number of chaplains of all kinds, said Josephine Schrader, executive director of the Association for Professional Chaplains, the largest certification body in the country. The increase includes traditional chaplains like those who serve police and fire departments, but the vast majority of recruits in the last 10 years — an estimated 3,000 chaplains, representing a 50 percent jump, she said — are working in hospice care.

They are in some ways a different breed. “The new chaplain culture is more professional and secular,” Ms. Schrader said, and “more adaptable” in approach.

Dia de los Muertos: New Incarnations of Old Traditions

Dia de los Muertos, or the Day of the Dead, is an ancient Central American holiday that memorializes loved ones who have died. The tradition is over 3,000 years old and is still observed by many inhabitants of Mexico, Central America, and, increasingly, worldwide.

When the Spanish colonialists arrived on this continent, they tried, unsuccessfully, to stamp out Dia de los Muertos, because they found the rituals to be bizarre and possibly blasphemous. When they realized they could not stop the holiday, they decided to move the date from August to the beginning of November in order to coincide with All Saints Day and All Soul Days—holidays officially sanctioned by the Catholic Church.

One primary difference between Dia de los Muertos and All Souls Day is the fundamental attitude towards death. With solemnity and reverence, All Souls Day observances tend to focus on what has been lost by the living. The tone of Dia de los Muertos, however, assumes continuity between life and the afterlife. With Dia de los Muertos, death is rather a new beginning—a rebirth.

Celebrants in more rural locations throughout Mexico observe by visiting the cemetery where their loved ones are buried. They clean the site of the grave, decorate it with candles and flowers, and bring gifts for their loved ones.

In today’s American Southwest, most second and third generation immigrants are not familiar with Dia de los Muertos and could find its attitude toward death—both festive and mocking—to be foreign. Some recent immigrants, however, still observe the holiday.

One of the primary crafts is the sugar skull. Molded from damp sugar, dried, and decorated with frosting, the sugar skulls are a key feature of any Dia de los Muertos celebration. The skulls are often placed on altars created by family members.

In the urban parts of Mexico and in the US, celebrants forego the cemetery celebrations and participate in rituals in their homes. They often create altars to commemorate the dead. Flowers, food, candles, sugar skulls, and pictures are used to honor the memory of the dead. It is believed by some that the spirits of the deceased travel the celestial plane to visit earth during Dia de los Muertos. The food is often left out for sustenance for the nonliving after the long voyage home. Like Santa Clause, the dead are said to consume the food, at least in part, while everyone sleeps.

Dia de los Muertos is now celebrated by more than just indigenous Central Americans. In the US, African-Americans, Native Americans, students, and artists have discovered the helpful role of the holiday.

Some find the light-hearted, mocking attitude a bit odd or threatening. In reality, however, the utmost respect is showed towards the dead.

Dia de los Muertos celebrations occur in Latin American countries besides Mexico. It is a recognized holiday in Brazil. Celebrations also take place in Guatemala, Haiti, the Philippines, and parts of Europe and Asia.

Joan Serber works for Hospice Brazos Valley in central Texas. She has been working for several years to revive the tradition in her area. Her initial efforts weren’t in a hospice setting, however. She worked with area artists and galleries to feature Dia de los Muertos art and crafts.

The best introduction to the holiday, according to Serber, is The Skeleton at the Feast: The Day of the Dead in Mexico by Elizabeth Carmichael and Chloë Sayer.

The tradition has been further melded with the Christian tradition in that crosses or statues of Jesus Christ or the Virgin Mary are often found on altars along with traditional items.

According to Serber, Hospice Brazos County created an altar for their therapy dog after his death. The staff and patients appreciated the reverent, if not quite solemn, displays.

As the Hispanic population rises throughout all parts of the United States, Dia de los Muertos will be an increasingly important holiday. Those who work in hospice programs that serve large immigrant populations should be knowledgeable of the holiday and prepared to help their grief clients observe its traditions, if so desired.

Keith Johnson, HFA

Round-Up: Hospice and Palliative Medicine News

• Palliative medicine is gaining further recognition as a subspecialty.The American Academy of Hospice and Palliative Medicine announced on October 24 that they have received notification from the Centers for Medicaid & Medicare Services (CMS) that the agency now recognizes Hospice and Palliative Medicine as a medical subspecialty.


• Tomorrow is the first American Board of Medical Specialties-recognized hospice and palliative medicine certification exam. The subspecialty certification was announced in 2006 and is co-sponsored by a number of boards, recognizing the shared interest in palliative care.


• This month the National Hospice and Palliative Care Organization (NHPCO) released a new version of their report "NHPCO Fact and Figures: Hospice Care in America." The updated report includes 2007 data covering the areas of hospice patient characteristics, hospice provider characteristics, location and level of care, and the role of paid and volunteer staff. NHPCO estimates that 1.4 million patients received hospice services in 2007 and that 38.8% of all deaths in the United States were under a hospice care program.


• The Center to Advance Palliative Care (CAPC) has released a new series of tools on their site for palliative care programs. Included in the tools are: the Top Tool Toolkit (customizable tools for individual palliative care programs), Policies and Tools for Hospital Palliative Care Programs: A Crosswalk of National Quality Forum Preferred Practices, Improving Palliative Care in Nursing Homes, and Tools for Financial and Strategic Planning.

Stability in End-of-Life Preferences Examined

The Oct. 27 edition of the Archives of Internal Medicine included a study of 818 physicians' end-of-life care preferences and compared them after a three-year period. The physician graduating medical school from 1948 to 1964 and answered a life-sustaining treatment questionnaire in 1999 and again in 2002.

The study showed that most people did not change their end-of-life care preferences, even after experiencing a decline in their mental or physical health. However, since some did change their minds, the researchers concluded that periodic reassessment of preferences is important, especially for those patients who desire aggressive end-of-life care or who do not have advance directives.

Alan Mozes of HealthDay News reported on the study, saying:

However, although the absolute numbers of those choosing one type of treatment approach or another remained more or less constant, individuals didn't necessarily stay in their original category, with some gravitating towards more or less aggressive intervention over time.

For example, among those who had indicated that they wanted "aggressive" treatment in 1999, just 41 percent maintained that preference in 2002.

Panelist Paul C. Rosenblatt Discusses HFA's 2009 Teleconference

HFA's national teleconference, Diversity and End-of-Life Care will look at the challenges of serving a multicultural population from time of terminal diagnosis all the way through the grieving process.

Each week, we have shared a panelist's own personal journey to working with those facing the end of life. These stories were a cogent reminder about the ways that one's culture and life experiences are intricately woven into the work that we do with patients and families.

Paul C. Rosenblatt has a PhD in Psychology and is Morse-Alumni Distinguished Teaching Professor of Family Social Science at the University of Minnesota. His recent books include Two in a Bed: The Social System of Couple Bed Sharing; African American Grief (with Beverly R. Wallace); Parental Grief: Narratives of Loss and Relationship; and Help Your Marriage Survive the Death of a Child.



Learn more about the teleconference, read all the panelist bios, and register to host a teleconference event in your community.

The teleconference allows your organization to offer an award-winning educational program to health care professionals and other caregivers in your community. In addition, you have an opportunity to present your own on-site session as part of the total teleconference program, which provides new 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.

Role of Race and Culture in Diagnosis and Treatment of Serious Illness and End-of-Life Planning

As part of the planning for Hospice Foundation of America's 16th annual teleconference, we are focused on the challenges of serving a multicultural population from time of terminal diagnosis all the way through the grieving process. Here are some recent studies and articles touching on the role of race and culture during serious illness and the end-of-life.

• A study appearing in the September 4, 2008 issue of the Journal of American Geriatrics Society examined the effect of "enhanced information regarding the risks, benefits, and life-sustaining treatment alternatives on hypothetical medical decisions and decisional conflict in older, community-dwelling Caucasian and African-American adults." The study of seventy-eight adults concluded that physicians and other healthcare professionals can reduce decisional conflict in patients by providing enhanced information regarding treatment risks, benefits, and alternatives. Such decision aids may provide new information or knowledge and thus reduce desire for treatment in African Americans."
  


• A report in the Journal of Clinical Oncology found that terminally ill African-American and Hispanic adults are less likely than whites to have a plan in place for end-of-life care, such as a living will or do-not-resuscitate order. Minority patients were "less likely than whites to consider themselves terminally ill and were more likely to want intensive treatment to prolong their lives. However, that did not explain their lower rates of advanced care planning. . ." The findings were based on:
  

  . . . interviews with 449 cancer patients who were believed to have fewer than six months left to live. They found that 80 percent of white patients had at least discussed end-of-life care with their doctors or had a documented plan in place -- through a living will, for example, or by designating a person to make their medical care decisions if they became too ill to do so. In contrast, this was true of only 47 percent of both black and Hispanic patients.
  



• An article in Monday's New York Times discussed the greater risk for Hispanics of developing dementia, especially at earlier ages.

  Studies suggest that many Hispanics may have more risk factors for developing dementia than other groups, and a significant number appear to be getting Alzheimer’s earlier. And surveys indicate that Latinos, less likely to see doctors because of financial and language barriers, more often mistake dementia symptoms for normal aging, delaying diagnosis.
  
  “This is the tip of the iceberg of a huge public health challenge,” said Yanira L. Cruz, president of the National Hispanic Council on Aging. “We really need to do more research in this population to really understand why is it that we’re developing these conditions much earlier.”
  
  It is not that Hispanics are more genetically predisposed to Alzheimer’s, say experts, who say the diversity of ethnicities that make up Hispanics or Latinos make a genetic explanation unlikely.
  
  Rather, experts say several factors, many linked to low income or cultural dislocation, may put Hispanics at greater risk for dementia, including higher rates of diabetes, obesity, cardiovascular disease, stroke and possibly hypertension.



• The Wall Street Journal discusses the challenge hospitals and cancer centers have addressing the role culture plays in treating patient's cancer.

  With ethnic minorities and immigrants fast becoming the collective U.S. majority, there is a push in medical circles to be more sensitive to cultural nuances. In 2001, the National Cancer Institute established the Center to Reduce Cancer Health Disparities to study why mortality rates for cancer can be so much higher for some groups than others. Only 71% of African-American women, for instance, survive for five years after a cancer diagnosis, compared to 86% of white women. Issues such as poverty, lack of access to care and inadequate care, are among probable reasons for the gap. But cultural factors, says the NCI center's director, Dr. Tanya Springfield, are now being recognized as a "significant" part of the problem.
  
  Maimonides is among several hospitals nationwide attempting to hit these issues head on. In addition to dispensing medical advice to individuals, doctors routinely confer with family members, rabbis and other religious leaders as part of some patients' care. The facility has several Asian oncologists on staff who speak Chinese dialects fluently. As a nod to discretion, the center is located about a mile from the main hospital and lacks any overt signage referring to its true mission of cancer treatment. A back entrance and a special waiting room with frosted glass help visitors go undetected.

Aging in Place: The Village Movement

The Washington Post's Fredrick Kunkle wrote about grass-roots organizations addressing the desire of the elderly to stay in their communities instead of moving to traditional assisted living residences. Their are several villages in development in 10 states.

For an annual fee, these organizations use a small professional staff and volunteers to arrange members' transportation to the doctor's office or the grocery store, to find in-home medical care or to compile a list of reliable contractors who do home repairs at a discount. Modeled on the idea of a hotel's concierge service or a village's face-to-face volunteerism, the organization is part of a broader strategy to promote "aging in place" as an alternative to retirement homes.

Nell Bernstein at Caring Currents also discusses the village movement:

Until recently, these villages have been limited to urban areas where seniors live in close proximity. The most famous is Boston's Beacon Hill Village, which offers consultations to other communities looking to replicate its model. This leaves out the many seniors who could benefit from something like this but who live in suburban or rural areas, and are more spread out.

My 80-year-old mother is among them. For a couple of years now, she and her 78-year-old neighbor have been collecting clippings on the elder village and similar models in the hope of starting something they could be part of, but they never got further than the keeping-a-folder stage. They worried that what works so seamlessly in the row houses of Boston wouldn't be feasible in the hilly seaside town where they are both determined to live out their years, in picturesque former summer homes reached by roads so narrow that cars heading uphill have to to pull over so downhill cars can pass.

Meanwhile, Jane Gross at the New Old Age blog shares some concerns about assisted living from geriatrician Dr. Cheryl Woodson, in her post "10 Things to Know about Assisted Living."

1. Assisted living, a popular solution for elderly people who cannot live independently, is a “myth,” Dr. Woodson said, “a place for people who don’t exist.” Families often believe these facilities will meet all of their loved ones’ needs, enabling caregivers to focus on jobs and family, only to find this isn’t the case. Before long, the elderly resident will require more than “meals you don’t have to cook, grass you don’t have to cut and socialization,” Dr. Woodson said. At that point the elderly resident is in trouble, since assisted living facilities are not permitted by law to provide medical care and consider it to be the family’s responsibility.

Upcoming Hospice, Caregiving and Bereavement Events

• From the Medicare Update blog:

  
  The Centers for Medicare & Medicaid Services (CMS) announced its next Home Health, Hospice & DME Open Door Forum at 2:00 p.m. (ET) on October 29, 2008. To participate by telephone, dial 1-800-837-1935 and use conference ID 58375034. To participate in person, RSVP and security clearance is required by 2:00 p.m. (ET) on October 27, 2008 to HOMEHEALTH_HOSPICE_DMEODF-L@cms.hhs.gov, and include your name, organization, telephone number, and "Home Health" in the subject line. The Open Door Forum will take place at the Hubert H. Humphrey Building, 200 Independence Avenue S.W., Washington, D.C. CMS provides an audio recording of the Open Door Forum 2 hours after the forum for 3 business days. Dial 1-800-642-1687 and enter the conference ID to access the recording.
  



• In honor of National Family Caregivers Month in November, the National Family Caregivers Association is hosting a FREE Family Caregiver Teleclass to teach family caregivers how to improve their communication with healthcare professionals and become better healthcare advocates for themselves and their loved ones. Learn more about the classes, being held November 6 and 13 at 2pm Eastern time.


• The Massachusetts Department of Public Health has given a grant to two groups in Massachusetts (the LGBT Aging Project and Ethos) to launch bereavement support groups in the state. The project consists of six free LGBT Bereavement Support Groups running for six weeks, led by a licensed clinical social worker who specializes in bereavement issues in the LGBT community. Learn more here.
  

Hospice and Palliative Nursing Video Released

The Alliance for Excellence in Hospice and Palliative Nursing (which includes the Hospice and Palliative Nurses Association, National Board for Certification of Hospice and Palliative Nurses, and the Hospice and Palliative Nurses Foundation) has released a Hospice and Palliative Nursing video. The video segment will be highlighted on Public Television’s broadcast of The National Medical Report as part of their future of nursing focus, which is hosted by national news anchor Hugh Downs. The video presents information on the importance of nursing care in the hospice and palliative field. Consumers wanting more information can call the Alliance at 866-651-2267 or see their website, www.TheAllianceForExcellence.org.

Panelist Dr. Richard Payne Discusses HFA's 2009 Teleconference

HFA's national teleconference, Diversity and End-of-Life Care will look at the challenges of serving a multicultural population from time of terminal diagnosis all the way through the grieving process.

Each week, we have shared a panelist's own personal journey to working with those facing the end of life. These stories were a cogent reminder about the ways that one's culture and life experiences are intricately woven into the work that we do with patients and families.

Richard Payne, MD is Director of the Duke Institute on Care at the End-of-Life and an internationally known expert in the areas of pain relief, palliative medicine, oncology and neurology. The Institute seeks to create knowledge and rediscover wisdoms about life’s end through interdisciplinary research and scholarship, teaching, and community outreach.

Are Hospice Bereavement Materials Readable for the General Public?

The Hospice and Nursing blog posted about a Morehead State University study of hospice bereavement materials.

The average reading level of most newspapers is 8th grade or below. This implies that most adult readers have a better comprehension of reading materials within that average range. With that in mind, what do you think the average reading level range is for hospice bereavement materials?

The “American Journal of Hospice and Palliative Care” reports this in results of a study by Morehead State University in Kentucky. Bereavement literature, including letters to families, as well as educational and resource materials available to families, caregivers, and the public, were rated in terms of reading levels. The Simplified Measure of Gobbledygook (yes, that’s the name), a readability process that is widely accepted by the literacy community, was used. Results of the study concluded that hospice bereavement materials are written at just above a 10th grade level. These results indicate a serious need for adjusting reading levels of hospice materials to levels more appropriate to those of the general public.

The study appeared in the American Journal of Hospice and Palliative Care.

Office of the Inspector General Work Plan Addresses Hospice Care

The Office of the Inspector General released its Work Plan for FY2009 earlier this month. The complete plan can be downloaded here (PDF). The sections that deal with hospice care are as follows:

Medicare Part A and Part B

Hospice Care

Medicare Hospice Care for Nursing Home Residents: Services and Appropriate Payments

We will review the nature and extent of hospice services that are provided to Medicare beneficiaries who reside in nursing facilities and assess the appropriateness of payments for these services. The Social Security Act, § 1861(dd), governs hospice care in the Medicare program. Medicare hospice spending doubled from $3.5 billion to $7 billion from 2001 to 2004, with the growth associated mostly with nursing home residents. A previous OIG review found that hospice beneficiaries in nursing facilities received nearly 46 percent fewer nursing and aid services than hospice beneficiaries residing at home. By conducting a medical record review of hospice services provided to selected beneficiaries, we will assess beneficiaries’ plans of care and determine whether the services that they receive are consistent with their plans of care and whether payments are appropriate.
(OEI; 02-06-00221; expected issue date: FY 2009; work in progress)

Physician Billing for Medicare Hospice Beneficiaries

We will review the extent of Part B billing for physician services provided to Medicare hospice beneficiaries. The regulations at 42 CFR § 418.304 list the physician services that are already covered by Medicare under the hospice benefit. The regulation provides that, for physicians employed by or in an arrangement with the hospice, payments for certain services are reimbursed to the hospice as part of the hospice payment, while other services are paid to the hospice under the Part B MPFS. Physicians may receive reimbursement for hospice services under Medicare Part A or Part B. This study is a followup to recent OIG studies on hospice care. We will determine the frequency of and total expenditures for physician services under Part A and Part B for hospice beneficiaries. We will identify whether physicians double-billed hospice services to Part A and Part B.
(OEI; 00-00-00000; expected issue date: FY 2009; new start)

Trends in Medicare Hospice Utilization

We will review Medicare Part A hospice claims to identify trends in hospice utilization. When the hospice benefit was created in section 122 of the Tax Equity and Fiscal Responsibility Act of 1982, Medicare did not cover more than 210 days of hospice care per beneficiary. Congress changed the benefit in section 4443 of the Balanced Budget Act of 1997 implemented by CMS at 42 CFR § 418.21, to eliminate the limit on the number of days covered by Medicare. Since then, the number and types of diagnoses associated with hospice utilization have increased, and longer stays have become more common. We will examine the characteristics of hospice beneficiaries, geographical variations in utilization, and differences between for-profit and not-for-profit providers.
(OEI; 00-00-00000; expected issue date: FY 2009; new start)

Medicare Part D Prescription Drug Program

Duplicate Drug Claims for Hospice Beneficiaries

We will review the appropriateness of drug claims for individuals who are receiving hospice benefits under Medicare Part A and drug coverage under Medicare Part D. Per the “Medicare Claims Processing Manual,” Pub. No. 100-04, ch. 11, § 30.2, CMS publishes the hospice payment rates, which include prescription drugs (used for pain relief and symptom control) related to the beneficiary’s terminal illness. Hospice providers are paid per diem amounts, which include drugs related to a hospice beneficiary’s terminal illness. Medicare Part D, which was implemented in January 2006, covers prescription drugs for Medicare beneficiaries enrolled in this voluntary benefit. Because the hospice program continues to cover prescription drugs related to a hospice beneficiary’s terminal illness, Medicare Part D drug plans may unknowingly duplicate payments for such drugs. We will determine whether payments made under Part D are correct, supported, and not duplicated in hospice per diem amounts. We will identify the extent of duplication and the controls to prevent duplicate drug payments.
(OAS; W-00-09-35307; various reviews; expected issue date: FY 2010; new start)

Watch Panelist Wanda Jenkins with Discuss HFA's 2009 Teleconference

HFA's national teleconference, Diversity and End-of-Life Care will look at the challenges of serving a multicultural population from time of terminal diagnosis all the way through the grieving process.

Each week, we have shared a panelist's own personal journey to working with those facing the end of life. These stories were a cogent reminder about the ways that one's culture and life experiences are intricately woven into the work that we do with patients and families.

Wanda Henry-Jenkins is the Manager of Bereavement Services at VITAS Innovative Services in the Chicago Northwest Program. Rev. Jenkins is a multifaceted human service and healthcare professional: writer, bereavement counselor, educator and manager, minister, nurse, motivational and inspirational speaker. Read her full bio here.

The Effects of Caregiving

Two posts about the effects of caregiving from yesterday touched on a similar theme, that women often assume most of the caregiving responsibilities for their aging or ailing parents. Jane Gross interviews geriatric care manager Pat Mulvey in yesterday's The New Old Age blog post. The post offers some helpful insight to those who are in a caregiving role.

Q: No criticism intended, but this is all pretty standard advice both from friends and professionals. But often caregivers can’t or won’t peel themselves away. When an adult child, especially a daughter, refuses to delegate anything and runs herself into the ground, what is going on emotionally or within the family that makes it impossible for her to back off a little?

A. This is an area where family history plays a huge part in how we respond to the caregiving role. If part of the family lore or story is that grandmother took care of eight children under the age of 7 while also taking care of both her aging parents and working as a seamstress while her husband worked in the mines — that becomes ingrained in us each time the story is repeated, and the story takes on different meanings in each of the listeners, like the childhood game of telephone.

Carol O'Dell, who writes the Mothering Mother and More blog, gives a stirring example of this passing down of family history in her blog post, "How Caregiving Affects Women," when she talks to her daughter about why she continues to care for her ailing mother despite the strain.

I remember one particularly difficult day when my middle daughter and I were in the bathroom having one of those “mirror conversations.” My mother had grown increasingly violent, out of control–her Alzheimer’s was like a hungry dog demanding I fill its bowl, a bowl with no end.

“Why don’t you just put her in nursing home?” My daughter said, aware of my heartbreak and exhaustion. It wasn’t said in a cold manner–more like, “You don’t have to kill yourself, you know.”

“I won’t say it’s not a possibility,” I said, “but one day, you and I will be standing right here, in front of this mirror, dressing for my mother’s funeral–and I’ve got to look at me in this mirror, look at you in this mirror, and I’ve got to know that I did all I could.”

I cared for my mother. My daughters cared for me. Yes, they sat with my mother, but their love, their devotion was for me. The torch had been passed.

Celebrate World Hospice and Palliative Care Day

World Hospice and Palliative Care Day is Saturday, October 11th. The theme for 2008 is "Hospice and Palliative Care: a Human Right."

World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.

Hospice Foundation of America is proud to be a signatory of the Joint Declaration and Statement of Commitment - Palliative Care and Pain Treatment as Human Rights (HFA should be added to the signatory list soon). For more information, go to www.worldday.org.

Also, the International Children's Palliative Care Network (ICPCN) has published a Charter of Rights for children with life-limiting or life threatening conditions, which they wish to see accepted and ratified by governments and health departments around the world. The ICPCN Charter is being launched to coincide with World Hospice and Palliative Care Day, and has been translated into 19 different African and European languages.

Associations between End-of-Life Discussions and End-of-Life Outcomes

The Journal of the American Medical Association published a study in today's issue titled "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment." The study found that patients who had end-of-life discussions with their physicians did not feel more sad, worried, or depressed than those who did not. Those patients were also more accepting of comfort care over aggressive life-extending treatment, and were more likely to enter hospice care earlier.

From the press release:

More aggressive medical care, which can cause upsetting side effects and hamper communication with loved ones, was associated with worse patient quality of life and worse adjustment by patients' bereaved caregivers.

"Overall, patients who received less aggressive care at the end of life were thought to have better quality of life by their family members and other informal caregivers," says first author Alexi Wright, MD, a hematology-oncology fellow at Dana-Farber and a research scholar in Dana-Farber's Center for Psycho-Oncology and Palliative Care Research.

Particularly striking to Wright was the impact of patients' end-of-life experiences on their loved one's ability to cope with their losses. For example, individuals whose loved ones died in an ICU were three times more likely to develop a major depressive disorder than informal caregivers whose loved ones didn't receive such intensive care.

"Our results suggest that end-of-life discussions may have cascading benefits for patients and their caregivers," the authors note. Adds Wright, "The way people die has a profound impact on the way their loved ones live on afterwards."

End-of-life conversations allow dying individuals to express wishes for the medical care they want to receive. However, these talks require facing their mortality and the limitations of treatments; about 20 percent of patients don't want to discuss death, according to Wright.

Pallimed discusses the methodology of the study and offers some thoughts on the conclusions.

Watch Panelist Ken Doka with Discuss HFA's 2009 Teleconferece: Diversity and End-of-Life Care

HFA’s 16th annual National Bereavement Teleconference addresses much more than bereavement - Diversity and End-of-Life Care will look at the challenges of serving a multicultural population from time of terminal diagnosis all the way through the grieving process.

During a recent meeting with the panel, we heard each panelist share his or her own personal journey to working with those facing the end of life. These stories were a cogent reminder about the ways that one's culture and life experiences are intricately woven into the work that we do with patients and families.

Kenneth J. Doka, PhD, mDiv, is a Professor of Gerontology at the Graduate School of The College of New Rochelle and Senior Consultant to the Hospice Foundation of America. He is a prolific author and editor. Read his full bio here.

Access to Hospital-Based Palliative Care Varies By State

The Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (both affiliated with Mount Sinai School of Medicine) have released a report on variability in access to hospital palliative care in the U.S. In a state-by-state ranking, New Hampshire, Montana, and Vermont received an A. Oklahoma, Alabama, and Mississippi got Fs. Other states were in between, with Southern states ranking lower than other areas of the country.

From MedPage Today:

To see what geographic variations affect palliative care access, the researchers combined data from the American Hospital Association Annual Survey Database for 2006, the American Association of Medical Colleges, the U.S. census, and the Dartmouth Atlas of Health Care 2008.

They supplemented these with mailed surveys, Web-site review, and telephone interviews of selected medical school admission offices.

Overall, 1,294 hospitals reported or were found to have palliative care programs among the 2,452 hospitals with 50 or more total facility beds -- a level considered large enough to be able to support the interdisciplinary team of nurse, social worker, and physician needed for such a program.

From a MarketWatch report:

Whereas in 2000 only a few hospitals in the U.S. provided palliative care services, this report documents a steady overall increase in adoption of palliative care, with 52.8% of hospitals surveyed offering services aimed at alleviating pain and suffering. The number of large hospitals (>249 beds) with palliative care programs has increased to 72.2%, while fewer small hospitals (>50 beds) reported offering these services. Growth in palliative care has occurred mainly in not-for-profit hospitals and has been most notable in the midwestern and western regions of the U.S.

. . .

Importantly, the study found that 84% of medical schools were associated with at least one hospital that has a palliative care program. This positive finding implies that future doctors will have access to training in palliative care, facilitating its incorporation into their daily patient care routines.

Additionally, the authors observed that the availability of palliative care services is inversely related to Medicare expenditures. "This implies that palliative care is consistent with other innovations--when the right care is applied to the right patient at the right time, overall costs go down because futile or ineffective approaches are abandoned in favor of the effective new intervention," says von Gunten.

View the state-by-state report card (America's Care of Serious Illness: A State-by-State Report Card on Palliative Care in Our Nation's Hospitals) or download the report findings from the Journal of Palliative Medicine.

The National Conference of State Legislatures also recently reported on state efforts to expand palliative care in Vermont, New York, Illinois, and Tennessee. Among those four, only Vermont received an A in the above report; the rest received Cs.

Program Finds Hospice Volunteers Among Active Military Personnel

This article from The Kansas City Star magazine discusses a new partnership between Kansas City’s Heartland Home Health Care & Hospice and the Marine Corps that provides volunteers for hospice patient visits.

Stacy Higgins, Heartland’s volunteer coordinator, came up with the program. She asked the Marines to get involved after noticing that one-quarter of [Heartland’s] hospice patients are veterans.

“If you were a prisoner of war in World War II, well, that’s nice to share the story with me,” she says. “But for someone who is serving our country today to come in and give them that time — now that’s powerful.”

Sixteen Marines volunteered after Higgins made a presentation to them in April. [Staff Sgt. Deuntae] Preston, the president of a local group of single Marines, saw the benefit in such a joint venture.

“I want to do this for what they did for us before,” he says. “Because the day might come when I’m that patient.”

The 400,000 plus hospice volunteers at work in hospices throughout the U.S. are an essential part of the hospice philosophy of care which recognizes that dying is not just a medical event but a personal one as well. These volunteers are important members of an interdisciplinary team working to “de-institutionalize” the dying experience and provide a more humane system of care for the dying and their families. In fact, federal law requires that at least 5% of patient care hours be provided by volunteers (if the hospice receives Medicare and Medicaid reimbursement.) Learn more about becoming a hospice volunteer.