The term itself is linguistically related to the words host and hospitality and originally referred to a lodging place or waystation for travelers in need of assistance. (One of the world’s oldest and most famous hospices in the original sense of the term is the Hospice of Great Saint Bernard in the Swiss Alps, which trains dogs to rescue stranded, snowbound hikers.) The current meaning still retains this suggestion of hospitality—only now, the “travelers” in need of care are the ones making the final journey to death.
The modern hospice movement dates back to 1967, when a British physician, Cicely Saunders, founded St. Christopher’s Hospice in South London, an institution committed to making the end of life as bearable as possible for both the patient and his family by ministering to the dying person’s physical, emotional, social, and even spiritual needs, as well as to those of his loved ones. Inspired by Saunders’s work, doctors and other personnel connected to the Yale University School of Medicine helped establish the Connecticut Hospice in 1971, the first such program in the United States. Seven years later, the National Hospice Organization (since renamed the National Hospice and Palliative Care Organization) was founded to “lead and mobilize social change for improved care at the end of life” (in the words of its mission statement). By 1997, more than 2,800 hospices existed throughout the country.
Even with the proliferation of these programs, however, only a minority of Americans—an estimated one in three—avail themselves of hospice care. This is a pity since even though there may be no really good way to die, the hospice option is infinitely preferable to the depersonalized (and often unnecessarily pain-ridden) alternative of death in a modern high-tech hospital.
A dying person can receive hospice care at home, in a special unit within a hospital, or in a separate residential facility In every case, however, the approach is the same. Central to the hospice philosophy is the conviction that a dying adult has the right to live out his or her final months as comfortably and naturally as possible—not as a frightened and helpless creature reduced to infantile dependence on Olympian medical specialists, but as an autonomous human being who is allowed to make his own decisions and whose wishes and needs (along with those of his family) are of paramount concern.
To achieve this goal, hospice programs deploy an interdisciplinary team of specialists to look after the patient and his family: doctors, nurses, social workers, bereavement coordinators, physical therapists, spiritual advisors, even financial counselors. Very crucially, hospices also reject the traditional medical approach to pain control, which is known as “PRN” (Latin for pro re nata, or “as the situation demands”)—meaning that pain medication is doled out only when the patient is in urgent need of it. It was Cicely Saunders who came up with what she herself has described as a “very obvious” alternative. Instead of making patients “earn their morphine” by reaching a point of acute suffering, hospices give medication in advance, before the pain begins. The idea is to prevent pain without sedating the patient, so that he or she can experience what remains of life to the fullest extent possible.
Psychologist Beatrice Kastenbaum relates a story about an American nurse who, while visiting St. Christopher’s Hospice in London, was surprised to see that—in contrast to the standard American oncology ward—“none of the patients had intravenous fluids hanging by the bedside.” When she commented on this fact, Saunders replied: “Isn’t it so much nicer to share a cup of tea?” Looking around, the nurse “noted that no patients seemed dehydrated and the staff did indeed share a cup of tea with the patients.”
This anecdote epitomizes the essence of hospice care, in which terminally ill patients forgo the dehumanizing indignities of life-prolonging measures for a caring and supportive end-of-life experience.
RECOMMENDED RESOURCES
As New York Times health columnist Jane E. Brody wisely suggests, “Patients and families should research hospice options well in advance of needing them.” The place to begin is the website of the National Hospice and Palliative Care Organization, www.nhpco.org. Click on “Find a Provider” or call the organization at 703-837-1500.
Shortly before his death, humorist Art Buchwald published a warm and witty account of his time in a Washington, D.C., hospice, Too Soon to Say Goodbye (Random House, 2006). If you have any doubts about the benefits of hospice care, this deeply wise and engaging book will dispel them.
For the growing number of people who are thinking about spending their final days at home, Andrea Sankar’s Dying at Home: A Family Guide for Caregiving (Johns Hopkins University Press, 1999) is absolutely essential. Sensitive, comprehensive, and unflinchingly direct about both the great rewards and equally significant burdens of home dying, this guidebook will tell you, without mincing words, exactly what this experience entails for both patients and their caregivers.
Death Foretold
It’s a cliché of countless old movies. Some two-fisted tough guy who has been experiencing unaccustomed bouts of illness finally goes for a checkup. “Give it to me straight, Doc,” he says to the grim-faced physician once the examination is over. “How long have I got?” The doctor typically frowns deeply, heaves a long sigh, then delivers the bitter truth: a week, maybe two at the most. The hero takes a moment to absorb the bad news, then squares his shoulders and heads off to take care of unfinished business.
Corny as it is, this type of scene always manages to pack a dramatic punch. But like most of what comes out of Hollywood, it bears little relation to reality. Far from being straightforward with their seriously ill patients—telling them frankly how near they are to death—actual physicians tend to shy away from such grim pronouncements. And “even when doctors do prognosticate,” writes physician and Harvard sociology professor Nicholas A. Christakis, “they typically overestimate the time a patient has to live, often at least tripling it.”
According to Christakis—who sets forth his case in his provocative book, Death Foretold: Prophecy and Prognosis in Medical Care (University of Chicago Press, 1999)—the failure of so many physicians to offer accurate, realistic predictions of a dying patient’s remaining time stems from various sources. These range from professional hubris—an arrogant belief in their powers to defeat even the most dire diseases—to their own deep-seated, largely unconscious terrors of mortality.
Unfortunately, it’s the dying patient and his loved ones who pay the price for this failure to receive a clear prognosis. As an example, Christakis cites the case of a cancer patient’s wife:
The Thursday before my husband died, I thought he was dying and he thought he was dying. But the doctor was talking about aggressive chemotherapy. I asked if this was palliative, and he said that he still hoped for a cure. I was with him at the time of his death three days later, but the room was filled with eight other people hanging bags of blood and monitoring vital signs. It was about as horrifying as anything that could have happened. I don’t think the doctors were trying to mislead us. They thought he might be the one case that would have a positive outcome. But if he had been told the truth, his last days could have been spent at home with the children, not filled with painful treatment in the hospital.
“In one study of nearly 5,000 hospitalized adults who had roughly six months to live,” writes Christakis, “only fifteen percent were given clear prognoses. In a smaller study of 326 cancer patients in Chicago hospices, all of whom had about a month to live, only thirty-seven percent of the doctors interviewed said they would share an accurate prognosis with their patients, and only if patients or their families pushed them to do so.” For the sake of those patients suffering terminal illnesses, Christakis urges doctors to learn how to offer “realistic assessments of how long their patients have to live.”
“Sometimes,” he concludes, “living life to the fullest requires knowledge of its finitude.”
What to Do When
Someone Dies
The good news for us twenty-first-century Americans is that—because our friends and relatives enjoy longer, healthi
er lives—death is something we rarely have to deal with on a personal level. Nowadays, it’s entirely possible for someone to reach middle age without ever having attended—much less arranged—a funeral. There is, however, a downside to this happy state of affairs: namely, that when the inevitable does happen to an immediate family member, we don’t know what to do.
What steps need to be taken in the immediate aftermath of a loved one’s death? That depends, to begin with, on where the death occurs. If it happens in a hospital and you are alone at the bedside, immediately notify a nurse, who will summon a doctor to pronounce death. The body may then be moved temporarily to the hospital morgue to await transportation.
When a terminally ill patient dies at home with no medical personnel in attendance, telephone your doctor. If, however, the death is sudden and totally unexpected, call 911. Depending on the circumstances, the coroner may have to be notified. If no further investigation is warranted, the body will then be released for disposal.
Family members will have to be contacted. Call the most important ones right away—children, siblings, parents of the deceased—even if it means waking them up in the middle of the night. (Researchers have found that “those close to the deceased feel left out if they aren’t informed about death immediately”) Other friends and relatives will also have to be told the sad news. Don’t try to do all this by yourself. Get three to five trusted people and ask each of them to call three to five others.
Assuming that you intend to give your loved one a traditional funeral (as opposed to some trendy alternative form of body disposal such as consigning the cremated ashes to an underwater “memorial reef”), you’ll need the services of a funeral home. If you haven’t preselected one, get someone you trust—a friend, family member, or a member of the clergy—to help find a suitable establishment and assist in making all the necessary (and difficult) decisions and arrangements. (For help with finding local funeral homes, visit www.funerals.org.)
Once you’ve settled on a funeral director, he will take charge of the body and dispatch a vehicle to retrieve it from the hospital or other location. (A medical school will also arrange transportation if your loved one has opted for body donation.) The funeral director will also handle or assist with other key tasks, such as placing an obituary notice in the newspaper, securing a death certificate (it’s best to get hold of ten to fifteen certified copies, which you may need for various legal purposes), and filing for benefits.
There are a number of practical matters that you’ll have to attend to. The Center on Aging at the University of Hawaii’s John A. Burns School of Medicine offers the following checklist:
Contact the Social Security office.
Contact the life insurance company of the deceased.
Explore eligibility for civil service and veteran’s benefits.
Notify the lawyer or executor of the estate.
Alert credit card companies.
Cancel prescription, newspaper, and other subscriptions.
Cancel automatic bill payments.
RECOMMENDED RESOURCES
The University of Hawaii’s Center on Aging has put together an excellent booklet, When a Death Occurs: What to Do When a Loved One Dies, available online at www.hawaii.edu/aging/ECHO4.pdf. Another helpful website is www.funeralplan.com. (One caveat: since the latter is sponsored by the Augusta Casket Company it automatically assumes that you will be arranging a traditional funeral.)
Two useful books on the subject are What to Do When a Loved One Dies: A Practical and Compassionate Guide to Dealing with Death on Life’s Terms by Eva Shaw (Dickens Press, 1994) and Step by Step: Your Guide to Making Practical Decisions When a Loved One Dies by Ellen Shaw (Quality Life Resources, 2001).
Death Certificates
A death certificate is an official document that has to be filed for various legal and bureaucratic purposes whenever someone dies. The standard format for U.S. death certificates was established in 1978 (you can download a sample at www.cdc.gov/nchs/data/dvs/DEATH11-03final-ACC.pdf).
Typically, the attending physician first fills out those portions pertaining to the cause of the death, then passes the certificate along to the funeral director, who completes the form and submits it to the appropriate municipal or state agency.
If you’re a do-it-yourselfer who decides to handle a loved one’s final disposition without the use of a funeral director, it will be up to you to fill out and file the death certificate. The form isn’t especially complicated, though it has to be completed with care (no Wite-Out permitted) and according to strict guidelines. You can find detailed instructions in Lisa Carlson’s Caring for the Dead: Your Final Act of Love (Upper Access, 1998).
Since death certificates are public-domain documents in the United States, it’s no surprise that—given our prurient interest in celebrity—the Internet offers ready access to the death certificates of assorted superstars, from Elvis to John Lennon to Jimi Hendrix. If you possess the requisite morbid curiosity, just go to Google Image Search and enter the dead celebrity’s name plus the phrase “death certificate.”
“Not So Fast, Johnson”:
The Dos and Don’ts of
Death Notification
There’s an old sick joke that goes like this:
DEATH FUN FACT
While heart disease and cancer remain the leading causes of death, there are all kinds of colorful ways that people have expired. For example:
• In the summer of 1995, a chef was killed by flying pasta when 150 mph winds hit his restaurant in Mexico City and a bunch of uncooked spaghetti shot through the air and stabbed him in the chest, puncturing his heart.
• In August 1997, a twenty-three-year-old stripper hired to leap out of a cake at a bachelor party in Cosenza, Italy, suffocated inside the giant pastry while waiting for her cue.
• In July 1995, an elderly French golfer, in a fit of frustration after missing three consecutive putts on the final hole, threw his golf bag into a lake, then—after realizing that his car keys were inside the bag— waded into the water and drowned.
• In June 1994, a bubblegum-chewing Aussie died in a traffic accident when he ran his car off the road after blowing a big bubble that burst and stuck to his glasses, blinding him.
These and scores of other zany human tragedies are recounted in Ian Simmons’s morbidly amusing collection, Strange Deaths: More than 375 Freakish Fatalities (John Brown Publishing, 1998).
An army captain summons his sergeant and says: “I just got a telegram that Private Fitzgerald’s mother died last night. You’d better go tell him.” So the sergeant lines up his troops and, after taking roll, says: “By the way, Fitzgerald, your mother’s dead.” When the captain hears about this, he pulls the sergeant aside and says, “Hey, Sarge, that was a pretty harsh way to tell a man that his mother just died. Try to be more tactful next time.” A few months later, another death notice arrives by telegram. This time, it concerns the mother of a private named Johnson. So the sergeant calls his morning formation. “Okay, men, fall in and listen up. Everybody whose mother is alive take two steps forward—not so fast, Johnson!”
The butt of this joke is, of course, the fabled callousness of the military establishment, which has often informed families of the most tragic news imaginable—the death of a child—by sending them what amounts to a form letter. But it touches on an issue that also affects countless civilians each year: the proper handling of what thanatologists call the “death notification process.”
Most deaths in this country—roughly 78 percent—are “anticipated,” which is to say that they are caused by cancer, AIDS, and other terminal illnesses. In these cases, receiving notification of the person’s death is rarely traumatic since the news doesn’t come as a surprise and may, in fact, afford a measure of relief to survivors, who know that their loved one’s suffering is over.
It’s the other 22 percent of deaths—the ones caused by vehicular crashes, homicides, suicides, household accidents, heart attacks, strokes
, et cetera—that can pose problems for professional “notifiers” such as police officers. There is no really good way to tell someone that his or her spouse, sibling, child, or parent has just met a sudden, unexpected, and possibly horrible death. But some ways are worse than others (psychologists Alan E. Stewart and Janice Harris Lord cite the case of a cop who arrived at a couple’s home and, finding no one there, left a note on the door informing them that their son had just killed himself).
TIPS FOR TRAVELERS
In March 2007, the Associated Press carried an item headlined “Airline Moves Dead Body to First Class.” According to the story, a woman traveling with family members from Delhi to London on British Airways died midflight in her economy-class seat. With the economy section full, the cabin crew—wishing to give the family a measure of privacy—transferred the body to an empty seat in first class. This came as something of a shock to the other first-class passengers, especially the gentleman who awoke to find a corpse beside him.
The airline later issued a statement explaining that about ten of its passengers die in transit each year. Since company policy dictates that “the deceased must not be placed in the galley or blocking aisles or exits,” the crew— according to the statement—made the right decision.
Meanwhile, travel experts agree that while it might get you upgraded, death should be avoided when possible.
Experts who have studied this subject have identified a number of elements that make for a competent and humane death notification, including:
The Whole Death Catalog Page 9