Dia de los Muertos: Memorializing Loved Ones

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
originally posted Oct 29, 2008

Dementia and the End of Life

A study appearing in The New England Journal of Medicine suggests improving palliative care for advanced dementia patients. Researchers, led by Dr. Susan Mitchell of Harvard Medical School,studied 323 nurshing home residents around Boston and found that although most patients primary care goal was stated as comfort care, over 40 percent received at least one medical intervention in the last three months of life.

Tara Parker-Pope at The New York Times also reported on the study:

Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.

But dementia is a physical illness, too — a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.

The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness. People with advanced dementia are often given dialysis and put on ventilators; they may even get preventive care that cannot possibly help them, like colonoscopies and drugs for osteoporosis or high cholesterol.

“You can go to an intensive-care unit in most places,” said Dr. Greg A. Sachs, chief of general internal medicine and geriatrics at Indiana University School of Medicine, “and you’ll find people with dementia getting very aggressive treatment.”

Palliative Care Institute in Buffalo Established

The Buffalo News reports that three organizations, The University at Buffalo, Veterans Affairs Medical Center, and the Center for Hospice & Palliative Care, joined to open a new Palliative Care Institute in Buffalo, NY. Among the institute's goals is replicating a program at the University of Buffalo's medical school that partners with a hospice to train specialists in palliative care. The institute plans to initiate training programs in the university's nursing and social work schools as well. Only 17 medical schools in the United States currently have such a program, according to the article.

More Research into the End-of-Life Care Received by African Americans

In a follow-up study to research released last year, researchers from Dana-Farber Cancer Institute observed that cancer patients’ treatment preferences were less likely to be observed if they were black, rather than white.

"End-of-life care discussions appeared to be more effective in ensuring that white patients' treatment preferences were honored," said Holly Prigerson, PhD, senior author of the report in The Journal of Clinical Oncology. The study is posted on the journal's web site and will be published in a future print edition.

"We are not saying that black treatment preferences were ignored," she emphasized. "Black patients did want, and did receive, more aggressive care than whites. The disparity was in the effect of treatment preferences on care received not that black preferences didn't matter."

. . .

"None of the white patients who reported the completion of a do-not-resuscitate order, or a DNR, order at baseline subsequently received intensive care in the last week of life," said Prigerson. "This did not prove to be the case for black patients. DNR orders did not significantly protect black patients from intensive end-of-life care in this study."

She said the black-white disparity in adherence to advance directives may be linked to gaps in communication, some of which resulted from discontinuities in care that may have been more prevalent in the treatment of black patients.

For example, the researchers identified a few instances where DNR orders completed for black patients fell through the cracks because their informal caregivers (friend or family member) changed over the course of their illness, or because a critically ill patient was treated at a different hospital from the one that normally provided their care.

HFA’s 2009 Initiative is focused on Diversity and End-of-Life Care. As part of that initiative, HFA produced a DVD, African Americans and End-of-Life Care, which examines African-American attitudes about care at the end of life; offers explanations as to why hospice, historically, has not been a choice for many African Americans; looks at grief and the African-American community; and suggests ways to reach out to African Americans who are making end-of-life decisions. The program is available for purchase hereand one Continuing Education credit is available for social workers, nurses, counselors, for an additional small fee.

Hospice Care in Prisons

Saturday’s New York Times included an article about hospice care in the nation’s prisons. Many programs use prisons as hospice volunteers to provide companionship at the end of life. The article focuses on how the experience can be transformative for the volunteers involved.

Grief, Holidays, and Family Dynamics

Monday, November 16, 1pm-2pm ET

Dealing with the complex relationships in a family facing grief can be challenging. Facing loss during the holidays often is very difficult. The additional stress may have an impact emotionally, cognitively, and physically, and it is important for professionals to help grieving people be prepared for these feelings.

The Hospice Foundation of America will offer a webinar offering advice and practical assistance for helping grieving persons during the holidays. Some may be grieving a death, while others may be anticipating the impending death of a loved one, knowing the holidays are approaching. And while this is the “season” of important holidays for many, holidays occur throughout the year that can generate grief such as Mother’s Day and Father’s Day, or summer holidays that were reserved for special family reunions.

In this program for professionals and consumers, Dr. Ken Doka and Dr. Sherry Schachter will discuss:

• How bereavement professionals and other providers can help grieving families think ahead about how their holidays may be different and difficult, and help them plan to cope more effectively
• Give three principles to help grieving people cope with the holidays
• Note two things to avoid as one faces the holidays
• Offer strategies to help grieving children during the holidays
• Describe programs and rituals that organizations can use to assist grieving families during the holiday season

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. See a complete list of board approvals.

Learn more about the program, including technical requirements, or register online now.

PBS to Explore End-of-Life Care Discussions Tonight

PBS’ Now program, airing on most stations this evening, will focus on end-of-life care discussions at Gundersen Lutheran Hospital in Wisconsin. After the broadcast, video will be made available on the PBS website.

How did private discussions between seniors and their doctors about end-of-life choices for the very ill or dying become a flash point in the national health care debate?

This week, NOW travels to Wisconsin to sit in on some of these sessions and see how health care reform could profoundly affect the lives of American seniors.

The not-for-profit Gundersen Lutheran Hospital has two decades of experience in this area. Their "Respecting Choices" initiative has become one of the most comprehensive end-of-life planning programs in the country.

Two families grappling with the most difficult and complex life and death issues gave NOW on PBS extraordinary access to their discussions and their decisions.

October 2009 Palliative Care Grand Rounds

The October 2009 edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at GeriPal, a Geriatrics and Palliative Care blog.

Caring for Cancer Patients

This article describes two volunteer programs at Canadian hospitals that support cancer patients and their families.

At the R.S. McLaughlin Durham Regional Cancer Centre in Oshawa, Ont., all volunteers go through a 30-hour palliative care course, regardless of whether they are assigned to the palliative care, oncology (chemotherapy) or radiation units.

The course is standardized for hospice volunteers across Ontario.

The volunteers watch documentaries about cancer patients and learn how the disease and treatments affect patients and their loved ones.

"It also makes you ask questions about your own life you might not otherwise address," says volunteer Pat Smallwood.

A review of 21 studies of cancer pain medication research conducted by Professor Michael Bennett of Lancaster University, has shown that cancer patients can reduce their experience of pain by a fifth when doctors give them information on how their pain medications work.

Professor Michael Bennett who carried out the study, said: "This is good news for cancer patients.

"Helping people manage pain is a major challenge for doctors and our research shows for the first time that education is an effective, easy and cheap way to do this."

HFA's 2010 initiative, Cancer and End-of-Life Care, will be broadcast live-via-webcast and satellite on Wednesday, March 24, 2010. Early Registration is now open.

The 2010 teleconference 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.

Learn more about the program, advertising opportunities, and our 2010 panelists.

Celebrate World Hospice and Palliative Care Day

World Hospice and Palliative Care Day is Saturday, October 10th. The theme for World Day 2009 is "Discovering your voice".

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

For more information, go to www.worldday.org

Support your local hospice and raise awareness of hospice services in your area.

Dying at Home

This Newsweek My Turn essay addresses the complications of not being under hospice care when a patient dies at home.

When my good friend's father died at home, it was as orderly and calm as could be hoped for. Yet what was unanticipated was the chaos that followed soon thereafter, an odd mix of sober adult heartbreak and the darkly comic. How did the expected death of a nonagenarian result in such commotion? Because few anticipate the bureaucratic adventure that ensues after a death at home. Hospitals and hospices, with their legendary capacity for completing forms, handle the task with chilly efficiency. But without their administrative help, doing it yourself isn't so easy.

Long gone are the days of the cowboy gently closing his slain buddy's eyes and moving on. When someone dies at home, a licensed professional must determine that the person is indeed dead. This should be worked out in advance with the doctor, but we have a way of disappearing at crucial moments. If this happens, the only option is to do what my friend did and call an ambulance—for a dead person. There are other annoyances: the death certificate must be completed in black ink (using only certain approved diagnoses), an undertaker needs to be selected, and law enforcement must be called to establish that no foul play occurred. As happened with my friend, officers may arrive ready for trouble—suspects, motives—and meet only a saddened family.

Alternative Housing Options for the Aging

The New Old Age blog featured a post last week discussing NORCs (naturally occurring retirement communities.) These are communities that were not designed as retirement communities, but end up having a large number of elderly residents. Many of these communities take steps to make sure the needs of aging residents are met.

NORCs exist all over; probably half of Miami Beach, Fla., was a NORC at one time. Watching this little community cope with shopping and banking and constant medical visits, I have wondered why services can’t be brought to these residents. Wouldn’t it be more efficient to have a nurse visit weekly, instead of each person making a laborious trip to a doctor’s office? For the senior van to schedule regular excursions to ShopRite? For the high school orchestra to give concerts in the community room, since so few older residents go out after dark?

A number of NORCs do offer this kind of help. Twenty-five states have NORC supportive service programs, according to the queen of NORCs, Fredda Vladeck, who runs the United Hospital Fund’s Aging in Place Initiative. New York leads the list with 54 NORC programs operating in high-rises, garden apartment complexes and neighborhoods of single-family homes; Indiana comes in second. The common mission of the programs, Ms. Vladeck said, is “transforming communities into good places to grow old.”

The state of New York is giving a health and rehabilitation center in Syracuse a $12 million grant to develop 13 "Green Houses". Once the houses are complete, two other traditional nursing facilities will be closed.

The total $40 million project will include construction of 13 of the small homes each housing 12 senior citizens, as well as 100 new assisted living program slots, which provide an alternative to nursing home care.

The project is supposed to move people away from the traditional nursing home setting and into more assisted care settings. This project will ultimately eliminate the need for 176 skilled nursing beds in the region.

Learn more about the Green House project.