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Posted on October 20, 2014 at 1:36 AM

by Craig Klugman, Ph.D.

In the United States in the year 1900, 52.6% of all deaths were due to infectious disease. the number one cause of death. When these patients died, a family member, friend, or member of a burial society washed their bodies and cleaned them. Their families held wakes and funerals in their homes, often laying out the body in the parlor. They would all go to the cemetery and the body would be buried in a family grave. In 2010, the most recent year for which records have been released, the number one cause of death is heart disease (31.9%) followed by cancer (30.9%). Influenza and pneumonia are a distant 8th leading cause of death at 2.9%. If a person dies in a hospital, IV lines, tubes and other medical devices will be removed and the body will be washed of blood and iodine. An autopsy is likely to be performed. These deaths will be followed by memorial services and celebrations in funeral homes. Many of them will feature viewings of the body that have been embalmed by mortuary professionals and made up to look like a picture of life. They will be buried and cremated and a very few will even be turned into diamonds or blasted into space.

For 2014, the number of deaths caused by Ebola will not appear as even a blip in the statistics. Influenza and pneumonia are the only infectious diseases that break the top ten causes of death and that is a small percent. Only 1 person has died of Ebola in the United States and about 4,500 worldwide. For these families though, the familiar rites of mourning, remembrance, and burial will be very different.

According to the Centers for Disease Control and Prevention, the Ebola virus remains detectable in the body after death. The fluids that often leak from a dead body can transmit the virus to others. These bodies will only be handled by trained personnel in personal protective equipment. The bodies will be moved as little as possible. There will be no autopsies. The body will not be washed. Families will not view the deceased. The body along with all medical equipment (e.g. IV lines, breathing tubes) will be rolled up in a plastic sheet and placed into a leakproof plastic bag and zippered closed. This will all be placed into another similar bag. The bag will be decontaminatied with strong disinfectants. The bags will never be opened. There will not be embalming. The body will be placed in a hermetically sealed casket. The body will be cremated to ensure destruction of the virus or buried.

In Africa, funeral rites have been centers of viral infection. Funerary practices include washing the body, touching the body, and kissing the body. The body is then buried in an individual plot. The many fluids that a body secretes after death get on the hands and lips of mourners who then become infected themselves. The Red Cross and governments of affected nations are contacting families of the dead. Instead of families burying the bodies, burial teams go into homes wearing biohazard suits. They zip the body of the deceased into a body bag. These trained teams disinfect everything that the deceased may have touched. No one is permitted to touch or kiss the body. The deceased are buried by these special teams or cremated.

The Ebola epidemic has sparked fear, misinformation, recognition of the inadequacy of global health infrastructure in undeveloped nations, acknowledgement of a lack of medical infrastructure (hospitals, equipment, health care providers), as well as endemic global health equity challenges to which the developed world has not attended. But there have also been challenges on the personal level that were not understood or necessarily predicted. For example, the need to destroy linens and to disinfect a patient’s home. The fact that even the burned and sterilized ashes of a patient’s belongings will not be permitted transport (currently the ashes of Duncan’s belonging are being refused transport into Louisiana). That hospital waste management companies would refuse to handle waste, causing the build up of piles of biohazard material in hospital loading docks.

The need to change funerary practices is another one of them. Paul Farmer writes in the London Review of Books, “Preparing the dead for burial has tuned hundreds of mourners into Ebola victims.” Funeral rites are important cultural practices that permit a family to grieve. Our notions of autonomy, respect for the dead, and even laws against mutilating a corpse show the special place that deceased hold in our hearts and in our cultural traditions. The World Health Organization says in cases of serious disease an outbreak that we should “Give priority to the living over the dead,…provide appropriate mortuary services,…respond to the wishes of the family, respect cultural and religious observances, and Protect communities from the transmission of medical epidemics.”

In normal times, part of advance care planning is thinking about one’s desired funeral wishes. We design our funerals, choosing pallbearers, deciding on an open or closed casket, picking what clothes we wish to be viewed in, and selecting readings ands songs. We choose our final resting place. A few years ago my parents bought their “death condominium” in a mausoleum facility. We prepare for the usual deaths whether by old age, chronic conditions, or the usual disease suspects (cardiovascular, cancer, stroke, lung disease, Alzheimer’s). We do not consider planning for the unusual—a deadly infectious disease, an earthquake, or a terrorist strike where there may be no body or only parts of a body. Such plans may not matter in these circumstances. There is not a great amount of leeway in dealing with the body of someone who dies from Ebola. The living must be protected. Funeral practices and mourning take second place to making sure no one is harmed from a potentially dangerous body.

This is a bioethical issue—a person’s and a family’s autonomy must be laid aside to protect the common good from harm. Public health needs take precedence over individual liberty. Whether these contingency situations should be part of advance care planning-funerary wishes—is worth considering. Or perhaps we should just inform those with whom we work that attempts will be made to honor their loved one according to their wishes except when those wishes can potentially harm others. Crisis planning overall is a missing piece of advance care planning. Maybe because it’s too hard, too rare, too much like fiction, or too scary. But in some cases, it is too real to ignore.

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