Modern Death in America

The twentieth century changed the landscape of death in the following ways:

Modern medicine – the development of antibiotics to treat previously “incurable diseases, as well as vaccinations that prevented diseases, organ transplants, feeding tubes, respirators all make for choices not previously seen about when we will die and how

Hospitals have arsenals to fight the death process and death is seen as a “medical failure”, rather than a season of life

With expectations that “all should be done to preserve life – ethic of modern physician training and practice

Underlying costs part of options available and decisions about care

Because death usually takes place in an institution, we have lost our familiarity with death, so we don’t know the rituals and behaviors that accompany it anymore

Perhaps the rituals are inappropriate or outmoded

Often careful decision about whether to allow it to happen, when and how to “let it happen”.

If a patient has a living will, does he need a DNR – Yes, according to Talking About Death Won’t Kill You by Virginia Morris.  By state law in the absence of a DNR, if EMTs are summoned they MUST by law begin to resuscitate.

Our death is our wedding with eternity.

Our death is our wedding with eternity.What is the secret? “God is One.”
The sunlight splits when entering the windows of the house.
This multiplicity exists in the cluster of grapes;
It is not in the juice made from the grapes.
For he who is living in the Light of God,
The death of the carnal soul is a blessing.
Regarding him, say neither bad nor good,
For he is gone beyond the good and the bad.
Fix your eyes on God and do not talk about what is invisible,
So that he may place another look in your eyes.
It is in the vision of the physical eyes
That no invisible or secret thing exists.
But when the eye is turned toward the Light of God
What thing could remain hidden under such a Light?
Although all lights emanate from the Divine Light
Don’t call all these lights “the Light of God”;
It is the eternal light which is the Light of God,
The ephemeral light is an attribute of the body and the flesh.
…Oh God who gives the grace of vision!
The bird of vision is flying towards You with the wings of desire.

Rumi

End-of-Life FACTS

50 percentof the conscious patients who die in the hospital have moderate-to-severepain at least half the time.
Source – $28-million study, funded by the RobertWood Johnson Foundation as reported in New England Journal June 27, 1996

“A substantial proportion of gravelyill hospitalized patients continue to receive inadequate painrelief and suffer from a burdensome and prolonged process ofdying characterized by the use of invasive medical technology.”
Source – New England Journal June 27, 1996

Television dramas makes it seem like CPR succeeds every time.
In reality, only 1% of people over the age of 70 survive a cardiac arrest when it occurs outside of a hospital.
Source – Annals of Internal Medicine 1989 August 1st

LANGUAGE IS VERY IMPORTANT
Every week I hear doctors and nurses ask patients/families if “they want everything done” – as if someone would be inclined to say they don’t want everything done for a loved one.
False choices and poor word selection is an unfortunate, but common way to discuss end-of-life care.
Pain is not the only cause of suffering in terminal illness.
Shortness of breath, insomnia, agitation, depression, constipation, nausea,and emotional and spiritual distress all also major sources of suffering.
All of these issues need to be addressed.
When patients are so often asked, “DO YOU WANT EVERYTHING DONE?” it ignores the fact that hospice providers do a lot in treating patients.
That question makes patients feel as if very little will be done if they don’t chose aggresive care in a terminal illness.
Withdrawing invasive treatment is not the same thing as withdrawing care.
– Source: Me (Gil Porat)

“The law permits, indeedrequires, clinicians to forgo treatment at the request of acompetent patient, even when the expressed purpose is to causethe patient’s death.”
Source – New England Journal Medicine December 11, 1997

The American healthcare system financially ruins many of its citizens who have a serious or terminal illness. Half of all bankruptcies in the United States are filed because of illness. Three quarters of those people actually HAVE health insurance.
Source – The Washington Post February 9, 2005 page A23

Refusing care is NOT the same as physician-assisted-suicide, where the goal is to speed up death.
If a patient decides to allow a disease process to progress without invasive treatments, that is ethical and legal in the United States.

Most patients that chose to end their life in Oregon with legalized Physician-Assisted-Suicide rarely cite pain as a top 3 reason for doing so.
The most cited reasons for participating are:
1) Loss of autonomy
2) Inability to participate in activities that make life enjoyable
3) Loss of dignity
Source – March 2007 Dept of Human Services Death With Dignity Act Annual Report

“Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.”
Source – N.Y. Times on May 5, 2008 – Article written by Jane Gross

“The largest study of matched patients who received hospice and no chemotherapy vs those who did not receive hospice care but had chemotherapy showed that survival was significantly longer for hospice patients with lung cancer and pancreatic cancer, marginally longer for colon cancer, but no different with breast and prostate cancer. The authors concluded that this was consistent  with chemotherapy not prolonging and possibly shortening life for those eligible for hospice.”
Source: Journal of the American Medical Association on June 11, 2008 page 2669

“Recent surveys have shown that most cancer patients in the U.S. express a preference to die at home. Despite this, about 75% of Americans with chronic illnesses die in a hospital or nursing home setting, although there are large regional differences.”
Quote Source: BMJ Group – Spring 2008 Report pages 7-8. They used the following studies for the data:
Cancer Nursing 2003;26:245-251 and Gerontologist 2001;41:123-128 and Medical Care Research and Review 2007;64:351-378

In advanced cancer, about 70% of patients have little or no desire to eat. Treatments such as chemotherapy can also worsen nausea and make it painful to swallow because of mucous membrane breakdown in the mouth and throat (called mucositis).
Weight loss in cancer occurs not only because of decreased nutrition intake. Cancer is a disease of growing tumors that use energy and nutrition (known as a catabolic state) with resulting loss of muscle mass and fat.
Journal of Clinical Oncology 2005;23:8500-8511

Terminally ill patients with weight loss frequently concern families and doctors. It is a very appropriate concern since weight loss in the terminally ill is indeed a poor prognostic factor.
As a result, doctors will frequently prescribe a medication call Megace (megestrol) to increase appetite.
While Megace may temporarily increase weight, the evidence it prolongs survival is poor. In fact, a study of 2,127 nursing home patients with weight loss showed that those recieving Megace died at an average of 24 months while those not recieving Megace died at an average of 31 months.
This is another example where the intention to help is admirable, but the results are hurtful. Is this yet another example of an other face of murder?
An all too common problem in treating the terminally ill.
The American Journal of Geriatric Pharmacotherapy 2007;5:137-146 A retrospective study of the association between megestrol acetate administration and mortality among nursing home residents with clinically significant weight loss

“Hospital palliative care programs have been shown to improve physical and psychological symptom management, caregiver well-being, and family satisfaction…”
Archives of Internal Medicine page 1783 on Sept 8, 2008.

“Five percent of Medicare enrollees with the most serious illness account for over 43% of Medicare expenditures.
Approximately 60% of total Medicare health expenditures are for hospital care.
Hospital palliative care consultation teams are associated with significant hospital cost savings.”
Archives of Internal Medicine pages 1789 and 1783 on Sept 8, 2008.

Family members want straight talk about poor patient prognosis
Researchers conducted face-to-face interviews with family members of seriously ill patients to determine their opinions about balancing hope and telling the truth about a poor prognosis. Nearly all of the surrogates said that withholding bad news was not acceptable. They felt that knowing the truth was important because it gave them an opportunity to prepare emotionally and practically for a loved one’s death. “Overall, 93% of surrogates felt thatavoiding discussions about prognosis is an unacceptable wayto maintain hope.”
Annals of Internal Medicine December 16, 2008

 

When you need help with estimating survival time, doctors with palliative care experience can be an important resource. “Their new perspective can be useful because prognostic accuracy declines the longer the physician has known the patient.”
Journal of American Medical Association Feb 11th, 2009 page 654
British Medical Journal 2000;320(7233):469-472

Greener Ways to the Great Beyond

Here’s how to ensure your final resting place is earth friendly and priced right.

By Nancy Smith

A typical, no-frills funeral and burial in the United States costs from $6,000 to $10,000, uses formaldehyde in embalming, nondegradable steel caskets and concrete vaults placed shoulder to shoulder in established cemeteries.

Burial in a green or natural cemetery, on the other hand, can cost half as touch, and embalming mortal caskets and concrete burial vault’s are prohibited. Instead, biodegradable caskets, usually made of wood or cardboard, or burial shrouds of natural fibers are used. Green cemetery graves are placed randomly throughout a woodland or meadow, and marked only in natural ways, with the planting of a tree or shrub, or the placement of a flat indigenous stone, which may or may not be engraved. Burial locations are mapped with a GIS (geographic information system), so future generations can locate an ancestors final resting place.

There are more than 200 green cemetery its in Great Britain, and the idea is beginning to catch on here in North America. Lisa Carlson is executive, director of the Funeral Consumers Alliance in South Burlington, Vermont, and author of Caring for the Dead, which tackles the topic of funeral law state by state. She reports embalming, expensive caskets anti concrete vaults are: not required by law in any state. Bodies can be kept cool until burial rather than being embalmed and cemeteries require vaults only to prevent soil settling and facilitate grass mowing.

The leader in the emerging green-cemetery business in this country, Carlson says, are Dr. Billy and Kimberley Campbell of Memorial Ecosystems, founded in 1996 in Westminster South Carolina. Their idea is to Use green cemeteries to preserve open space. You can be buried at the Campbells first green cemetery, Ramsey Creek Preserve, in Westminster, and visitors can walk on trails through 32 acres of mixed Woodlands and open fields there.

In Florida, a green cemetery called Glendale Memorial Preserve is being established to save a 350-acre family farm from development. And groups in several other states, inducting Colorado, California, New York, Washington and Wisconsin, have efforts under way to established green cemeteries that center on land preservation. In Canada, the Memorial Society of British Columbia also has a formally funded green-burial initiative under way.

The first burial at Ramsey Creek Preserve occurred in the fall of 1998; to date, 17 more have taken place. Another 50 persons have purchased sites. A casket burial there costs about $2,500. Burial of cremated remains is only $500; scattering of cremated remains is $250. Stone grave markers and engraving are optional; the stones are $25; engraving ranges from $125 to $300. Caskets are not included. (For instructions on building your own casket, see Page 61.)

Dr. Campbell says people seem to want to be buried there because of the site’s natural beauty, the lower cost and the land preservation effort. Bodies usually arrive for burial at Ramsey Creek Preserve via a local, independent funeral home, whose owner has agreed to hold them under refrigeration until delivery to the preserve. The nature of any graveside ceremony is determined by the families. “Whatever spiritual bent you bring to the preserve, our natural landscape is very healing,” Kimberley Campbell says. “What we do is very simple, but there is something very, very special about the simplicity of it.”

Sherrill Hughes buried her husband, Roland, at Ramsey Creek Preserve. She says she knows without a doubt that was what he would have wanted. His body was placed in a simple pine box—a preference he had expressed—and buried under a dogwood tree; her grave site is right next to his, and she says her children all want to be buried there, too. “Roland’s funeral was so personal. In most funerals there’s no emotion, but at Ramsey Creek, you can do what you want.” She played his favorite songs Dolly Parton’s “I Will Always Love You” and George Jones’ “He Stopped Loving Her Today”—and placed the first spade full of dirt in his grave.

Following her lead; their children shoveled too, “and before we knew it, the boys-my two sons-in- and nephew – had nearly finished tilling in the grave.”

Hughes, who lives in Atlanta, says she wouldn’t describe herself or her husband as environmentalists. Rather. they always just tried to take care of what God had given them, “and that included the Earth.” She plans to move to the Westminster area soon, where most of her family al ready lives, and she plans on building her own casket and helping out as a volunteer at the preserve.

Dr. Campbell says folks buried there so far fit a range of descriptions, and the majority are not environmentalists—which is exciting to him. Going through a green burial process helps people get beyond the “nature as wallpaper” mentality, he explains. The only medical doctor in Westminster, he has a longtime interest in the environment (in 1986, he helped found the South Carolina Forest Watch, a group that monitors the well-being of the state’s forests) and he has been dealing with death since his medical school days; his wife thinks it’s a reassuring combination to their patrons. She also says Atlanta’s suburban sprawl is fast encroaching on their area, so they feel a sense of urgency.

Dr. Campbell says, “My idea is that we need to link land conservation with ritual and with people in a very fundamental way. When the economy is not quite what it should be, money is a problem (for groups dedicated to land preservation), but if Mamma and Grandmamma are buried some place, you might look at it differently.”

Establishing the preserve seemed simple, but it proved a daunting task, according to Kimberley Campbell. In 1992, the state cemetery board was legislatively disbanded; as a consequence, determining which authorities to contact about the project proved a challenge.

To help build the site’s status as a nature preserve, an inventory of plants has been taken, and Dr. Campbell says a “site appropriate” native plant—the smooth-leafed coneflower (Echinacea laevigata) — is being planted on some of the grave sites to take advantage of the disturbed soil. Tripartite violets and the crested coral root, uncommon native plants, also have been found.

A visitor’s center, staffed by Kimberley’s parents, sits near the entrance, and an old chapel has been moved onto the grounds to be restored for use by people of all faiths. Life histories of those buried at the site will be archived there.

The Campbells also have provided assistance to others interested in following their example. Dr. Campbell says he is willing to work with any entity with large land holdings that might want to set up a similar preserve—complete with ethical oversights in both financial and environmental areas. “We’re building a socially responsible for-profit business,” he says of Memorial Ecosystems.

Of the other green burial initiatives under way in the United States, the closest to being operational is the Glendale Memorial Nature Preserve near Glendale, Florida. It is owned by brothers John and Bill Wilkerson, and now can accept burials but not yet legally charge for them. John, the family’s spokesperson, says that’s because he and his brother still are negotiating with the state of Florida over a $5,000 nonrefundable cemetery application fee, plus a $50,000 trust fund required to ensure maintenance of the nature preserve but which duplicates a fund to be established under Memorial Ecosystems guidelines. Until an agreement is reached, in lieu of a formal burial fee, donations were being accepted; as of early 2003, no burials had taken place.

The Glendale preserve was established, John says, because he and his brother took their father seriously when he said, “Boys, this is a beautiful piece of property. It would be a shame to turn it into a mobile-home park.” The entire 350-acre farm, where the elder Wilkerson grew peanuts, corn and soybeans, and his sons now grow chufa, a specialty wildlife seed crop, will be the preserve.

In addition to providing grave sites, the Wikersons make simple coffins from native woods, using an on-farm sawmill, and have gathered a selection of flat indigenous stones, which a local stonemason has agreed to engrave.

John says he and Bill handled their own parents’ burials, including making the coffins—pine for Dad; poplar for Mom—and digging the graves. Their father died in 1996 and their mother, who wanted her funeral and burial to be a simple affair, “and never missed a chance to remind us of that,” died in 2000. The couple is buried in a little church cemetery that lies adjacent to the farm, on land they donated earlier to the church. Digging those graves was “a very powerful thing to do,” John says. “It really facilitated the grieving process.”

Dr. Campbell, who is on the Glendale Preserve’s board of directors but not involved financially in the project, has attended meetings between the Wilkersons and Florida state officials to help explain the memorial preserve idea. He says he thinks Florida’s financial requirements are “oppressive” and notes an Ohio group also trying to establish a memorial preserve is dealing with a similar situation. Such fees are designed to help ensure perpetual care” lot grave site’, in a new cemetery. .says Carlson, but in a green cemetery, traditional maintenance practices, like large-.5c-.ilu lawn mowing, do not occur.

The rules at both Ramsey Creek and Glendale Preserves are simple: No embalming no casket unless it is biodegradable, no vault and no stone that that can be pushed over. Kimberley Campbell says they advocate natural burial as the best choice and cremation as the second best because cremation uses energy and re leases toxins into the environment. Natural burial really isn’t a new idea, she adds. “It’s thousands of years old, and the reason is, its a very natural effective way to dispose of a person’s remains. And wouldn’t it be wonderful to visit a loved one’s grave a site atom, a beautiful prune trail, in a towering England forest or other quiet place of natural beauty?

HOME FUNERALS

Your mother is dying. You want to care for her yourself, at home, when death finally arrives, rather than hiring a mortuary. She feels the same. Together, while there is still time, you decide to plan her service and burial. How do you begin?

Three books are especially helpful: Caring for the Dead: Your Final Act of Love, by Lisa Carlson; Guidebook for Creating Home Funerals by Jerri Lyons; and Dealing Creatively with Death, A Manual of Death Education and Simple Burial by Ernest Morgan.

Carlson, executive director of the nonprofit Funeral Consumers Alliance in South Burlington, Vermont, has become a national spokesperson for the “do-it-yourself” funeral movement in the last few years. She says such burials, especially on private land, appear to be on the rise. “There’s no easy way to track it, but there seems to be an ongoing interest in family burial. It’s being done quietly, but the number of inquiries on this topic at the Funeral Consumers Alliance is definitely increasing.”

The trend is totally predictable, she adds. “The generation that demanded natural childbirth in the ’60s and ’70s, and recycling in the ’90s is wanting green burials, including do-it-yourselfers, now.”

Author Jerri Lyons is director of Final Passages, a 7-year-old not-for-profit organization in Sebastopol, California, and a death midwife. Her goal with Final Passages is “to reintroduce the concept of funerals in the home as a part of family life and as a way to deinstitutionalize death.” Through this nonprofit project, she provides information and education, and through her own for-profit company, Home and Family Funerals, she offers her death midwife services. She knows of several other death midwives in California and one in Maryland: others may be working quietly on their own in other areas.

Lyons personally has helped more than 200 California families handle their own funerals, and she has counseled many more across the country via the telephone. She says she believes the widespread practice of having the deceased person’s body whisked away at the time of death by funeral home personnel interrupts the normal grieving process and destroys the coherence families can achieve on their own. When the family handles is own funerals, members gain “better closure, a sense of empowerment and substantial economic savings.”

Lyons’ guidebook includes step-by-step instructions for such things as washing and dressing the body to “lie in honor,” and handling transportation of the body home and/or to the place of disposition, which is either cremation or burial. The book also includes specific information on government paperwork required for home funerals in California.

Through Final Passages, Lyons presents workshops about funeral options and about becoming death guides or death midwives like herself.

Most of the families Lyons has helped used cremation for disposition of the body. She also has participated in one “earth friendly” or green burial, in the Sebastopol Memorial Lawn Cemetery, an older, privately owned facility. The body was not embalmed; the casket was pine and no vault was used; the dirt was simply mounded up on the grave, rather than being leveled as it is over a vault.

Lyons predicts green and home burials will increase if information about them becomes more widely available. “Most people in this country don’t know they have the legal right to care for their own loved ones when they die,” she says.

The organization’s Web site includes interviews with people who have planned their own funerals and photographs of burials, along with resource information. Death midwife Jerri Lyons sits with Jasmine during her threeday wake, which was held in a friend’s home overlooking the Pacific Ocean.

Carlson cautions persons who choose to handle death privately to “take great care to follow all state and local regulations. The requirements are not complex, but failure to meet them can lead to unpleasant situations and create a climate in which professionals become less willing to work with families.”

In her book, she explains the precision needed in filling out a death certificate, required by every state, and she reports situations where special death certificates are required, including fetal deaths and those that require an autopsy. She notes that special circumstances, such as an extended time between death and disposition, may make embalming necessary, but refrigeration or dry ice can take the place of embalming in many instances. She also warns readers to “never move a body without a permit or medical permission.”

Home burials require an examination of local zoning ordinances, says Carlson. “For those with land in rural or semi-rural areas, home burials usually are possible.”

REMEMBER

Even if you use a conventional funeral home and cemetery, be aware that embalming, expensive caskets and concrete vaults generally are not required by law. Cemeteries may set such requirements, and waive them if they choose. So, if you want a simpler burial, ask around. You may find a funeral home and cemetery that suits your needs.

If you are thinking about handling a funeral yourself, you should know that most states clearly allow families to care for their own dead, according to Lisa Carlson, author of Caring for the Dead:Your Final Act of Love. Only six states may limit families who want to take charge of the process: Connecticut, Indiana, Louisiana, Michigan (thanks to an uncooperative health department despite a law that says otherwise), Nebraska and New York. For more details, read Caring for the Dead, or contact Carlson at www.funerals.org. If you don’t hire a funeral director, here are some things you should know:

Death Certificates. A death certificate stating the cause of death and signed by a doctor must be filed, usually in the county or district where death occurs, where a body is found, or where a body is removed from a public conveyance or vehicle. This must usually be accomplished before other permits are granted or before final disposition.

Embalming. No state requires routine embalming of all bodies. Refrigeration or dry ice can substitute for embalming in most instances. Special circumstances such as extended time between death and disposition can necessitate embalming under state law. Interstate transportation by a common carrier also may require it.

Burial permits. In some states, when burial will be outside the county or town where death occurred, you will need an additional permit to inter from the local registrar in that area. In many states, the top of the coffin must be at least 3 feet below the soil surface. A burial location should be 150 feet or more from a water supply and outside the utility or power line easements.

Moving a body. Never move a body without having a permit or medical permission in hand!

Cremation. A special permit-to-cremate may be needed; these are available from the local coroner or medical examiner, and a modest fee is usually charged.


Join the Experts Online

Learn more about green burials and home funerals, and chat with guest experts Dr. Billy and Kimberley Campbell, Lisa Carlson, John Wilkerson, Mary Woodsen and Jerri Lyons on the MOTHER EARTH NEWS Web site at www.motherearthnews.com/forums/

EACH YEAR IN THE U.S. we bury:

827,060 gallons of embalming fluid, which includes formaldehyde 180,544,000 pounds of steel, in caskets 5,400,000 pounds of copper and bronze, in caskets 30 million board feet of hardwoods, including tropical woods, in caskets 3,272,000,000 pounds of reinforced concrete in vaults 28,000,000 pounds of steel in vaults

Statistics compiled by Mary Woodsen, vice president of the Pre-Posthumous Society of Ithaca, New York, and a science writer at Comell University.


For More Information

Funeral Consumers Alliance.
Lisa Carlson; 33 Patchen Road;
South Burlington, VT 05403;
(800) 765-0107

Final Passages. Jerri Lyons; PO.
Box 1721; Sebastopol, CA 95473;
(707) 824-0268

Memorial Ecosystems, Inc. and Ramsey Creek Preserve.
Dr. Billy and Kimberley Campbell;
113 Retreat St.;
Westminster, SC 29693;
(864) 6477798

Glendale Memorial Nature Preserve.
John and Bill Wilkerson;
297 Railroad Ave.; DeFuniak Springs,
FL 32433; (850) 859-2141; www.glendalenaturepreserve.org

The North American Woodland Burial Society.
An information exchange:
woodlandburial.htmlplanet.com

The Memorial Society of British Columbia.
212-1847 W. Broadway;
Vancouver, British Columbia V6J 1Y6;
(604) 733-7705; www.memorialsocietybc.org

Death Expenses At Bay Area Hospitals Make Some Reevaluate The Cost of Dying

San Jose Mercury News | By Lisa M. Krieger

How you die — and what it costs — depends largely on where you get care. That’s the revelation of a major national database widely regarded as the best hospital-by-hospital look at the cost of dying.

It shows that Bay Area residents are about twice as likely to die in a high-cost, high-tech intensive care unit as people in Minot, N.D., or Portland, Ore. But they are far less likely to get ICU care than residents of Manhattan.

Within the Bay Area, the Dartmouth Atlas of Health Care depicts hospitals’ widely different approaches to care for dying people: Hayward’s St. Rose Hospital ranks twice as high as Stanford in “intensity of care,” a measure that considers the amount of time that dying patients spend in the hospital and the aggressiveness of physician services.

Major differences appear even within cities: In San Jose, Regional Medical Center and Good Samaritan Hospital are 15 miles apart — but Medicare spent an extra $23,000, or a third more, per patient in their last two years of life at Regional than Good Samaritan, because of different care strategies.

America’s varied landscape of end-of-life experiences reflects different philosophies in how aggressively hospitals combat death, concludes Dartmouth’s 2011 analysis. While some hospitals marshal doctors and devices to postpone death even when death is clearly certain, others favor care options that let the end of life proceed in comfortable settings, or even at home.

“We think that science drives clinical decision-making,” said Dartmouth investigator Dr. Elliott Fisher. “But those decisions are sharply conditioned by how many beds are in our community and how our physicians have become accustomed to treating seriously ill patients.

“In the topsy-turvy world of health care, doctors and hospitals have a very powerful influence on how you are treated,” he said.

Geographic and institutional variations in care are the subject of this installment of the ongoing series on the Cost of Dying. To understand those patterns, there is no better source of data than the Dartmouth analysis, which reveals patterns of care that patients and families can use to weigh where physicians are likely to be more, or less, aggressive.

Subjective decisions

California law states that physicians can not be required to provide medical care that they believe will be ineffective. But textbooks offer no standard formula for end-of-life treatment, and it can be hard to predict who will benefit or be harmed.

If patients have not specified in writing their end-of-life wishes in advance, their fates rest on doctors’ accumulated subjective decisions about treatments and tests to order or to resist.

“These differences pan out because the way we practice is different,” said Dr. Steven Pantilat, director of UCSF’s Palliative Care Program. “It’s not the patients.”

For more than two decades, the Dartmouth Atlas Project has documented glaring variations in how medical resources are distributed and used in the United States. The project analyzes Medicare’s billing records to obtain information about national, regional and local markets, as well as hospitals and their affiliated physicians. It aims to boost understanding of our health care system and forms the foundation for many efforts to improve care across America.

The project has its critics, who say its death analyses ignore the people who are still alive thanks to aggressive doctors.

Higher-spending hospitals seem to save more lives, according to one study of heart failure patients at six California teaching hospitals.

That finding is missed in the Dartmouth work because it focuses only on dead patients, according to author Michael Ong of UCLA. “For physicians, patients and patients’ families, survival is a critical concern,” he wrote.

But its supporters say the data shine a harsh light on “do everything” impulses in hospitals, which can prolong suffering or dying.

One end-of-life analysis is based on billing records of Medicare patients in their final two years of life between 2003 and 2007, the most recent years for which information was available. It assesses each hospital on an “intensity index,” based on hospitalization of patients before their deaths.

Another analysis focuses more narrowly on care for people who died of cancer. It asks: In their final month of life, did they stay in the ICU, or have hospice care? Were they given chemotherapy or life-sustainers, such as ventilators and feeding tubes?

Among the findings revealed by the Atlas’ data:

–In their final six months of life, almost 90 percent of cancer patients at Alta Bates Summit Medical Center in Berkeley saw 10 or more doctors — compared with only 33 percent in Community Hospital of the Monterey Peninsula. Doctors’ poking, prodding and testing can be onerous at the end of life.

–More than 50 percent of cancer patients at Stanford, Mountain View’s El Camino and Concord’s John Muir were enrolled in hospice during their final month, compared with 31 percent at Alta Bates Summit Medical Center in Oakland. Hospice is a comforting alternative to hospitalization for dying people; rather than submitting to an intensive chase for cures, patients get relief from pain and anxiety. Hospice also offers emotional and practical support to families.

–In California, Los Angeles County had the highest percentage of advanced cancer patients dying in hospitals, about 41 percent, followed by Fresno (39 percent), Bakersfield (37 percent), San Francisco (36 percent) and Modesto (36 percent).

–Nationally, cancer patients were more likely to receive “aggressive life-sustaining treatment” — such as CPR and artificial breathing, feeding and hydration — during the last weeks of their lives in Los Angeles (18 percent) and Orange County (17 percent), as compared with Minneapolis (4 percent), Des Moines, Iowa (5 percent) and Seattle (6 percent).

To ensure fair comparisons among regions, rates were adjusted to remove differences because of age, sex and racial compositions.

Intensity of care

Health care for elderly Americans at the end of life has been changing.

Dying patients are spending fewer days in the hospital and more time in hospice, investigators said.

But for patients who are hospitalized, the data show an increasing intensity of care — with more doctors’ visits and greater reliance on the high-cost ICU.

This holds true even for Bay Area hospitals like Stanford and UCSF, with strong palliative care programs that offer on-site relief from the pain and stress of a serious illness.

When 76-year-old Sarah Kyung Lee, of Foster City, fell and hit her head while on a walk in March, she was taken to Stanford, where she received IV lines, a urinary catheter and daily blood draws. Because she is a frail woman, with lifelong heart problems, the hospital sought to monitor her closely.

But her son, geriatrician Dr. Sei Lee of UCSF, insisted the hospital release her. So she was sent home to her board-and-care facility.

“It was exhausting, continually trying to prevent care that was too aggressive,” he said.

She recovered in her own quiet bedroom, with a Bible, family photos and homemade Korean food.

Stanford Chief Medical Officer Dr. Norman Rizk responded that some families would be uncomfortable with the early discharge of a relative. “We acknowledge there is a wide variety of sentiments about the levels of care appropriate for elderly patients,” he said. “Care cannot be generic; it must be about personal preferences.”

What’s happening is that “end of life is becoming more health care intensive,” said Judy Citko, director of the Coalition for Compassionate Care in California. “It’s a natural progression of two trends: People are living longer with more chronic conditions, and there are more things that the health care system can do.”

Yet with all our new tools, it’s harder to know what helps, and what doesn’t, she said.

“For example, there are a lot more chemotherapy options,” she said. “But there’s not a clear demarcation when the transition occurs from chemo that has a good chance of being helpful to chemo that is a complete long shot.”

Culture and resources

The Medicare data don’t examine how hospitals help — or don’t help — patients make these choices. And it doesn’t reveal reasons for the variations in medical care at the end of life.

But research by Dartmouth and others suggests that treatment trends result from different medical cultures and resources.

In medicine, supply drives demand. So regions with a lot of doctors tend to have more hospitals, offer more medical services and charge more.

“The most expensive piece of medical equipment is the doctor’s pen,” which signs orders for hospitalizations, tests, treatments and referrals to pricey specialty doctors, writes Atul Gawande, author, public health researcher and surgeon at Brigham and Women’s Hospital in Boston.

When a city or hospital has a lot of empty beds, local physicians unconsciously adapt to this higher capacity and admit more patients, the Dartmouth team said. Research at Dartmouth and elsewhere shows that when ICU beds are readily available, less severely ill patients fill them and stay longer.

Imagine that a patient’s chronic condition worsens; if the nearby hospital has a lot of room, a doctor may reason it is safer and easier to treat them there.

But if the hospital doesn’t have available beds, doctors may look harder for stay-at-home alternatives, said UCSF’s Pantilat.

This explains the differences in care between San Francisco and Los Angeles. “In the San Francisco Bay Area, where hospitals are fuller, we see less intensive care than in L.A., where beds are readily available,” said Maribeth Shannon of the California HealthCare Foundation in Sacramento.

Medical school curriculums also drive regional differences: Medical residents often practice where they studied, reinforcing the region’s culture of care.

End-of-life training

At UCSF, medical students hear lectures in pain management and palliative care and participate in discussions about dying.

They even get lessons, using paid actors, in how to break bad news. Studies show that doctors who don’t feel comfortable discussing end-of-life options are more likely to propose more treatment, no matter how futile.

The hospitals that take the time for vital conversations are the ones that keep dying patients out of ICUs, off ventilators and free of desperate chemotherapy, Pantilat said.

They give patients impartial and accurate information about end-of-life choices. They describe options of palliative care or hospice. They mention the complications of treatment. They probe families’ goals, such as pain control, dignity and quality of life.

Those are some of the steps being taken by Daly City’s Seton Medical Center, which in 2007 ranked high among Bay Area hospitals for its frequency of treating end-of-life patients in its ICU.

“We began to realize that we were protracting death, not ensuring life, and that wasn’t right,” said Seton Chief Medical Officer Dr. Irwin Shelub. The hospital hired a palliative care coordinator and chief medical officer. It insists on frequent family conferences. It has even put into place a “Medically Ineffective Care” policy, which forestalls unnecessary or ineffective care.

Under the policy, when Seton’s medical team agrees that a patient would be better served by “comfort care,” it meets with family members to say so. If the family disagrees, the hospital has the authority to discharge the patient and helps families find another facility.

“We’ve dramatically changed our direction,” Shelub said. “We don’t want to engage in futile care.”

Even more ambitious city and statewide efforts are happening outside the Bay Area.

A model of “low intensity” end-of-life care, Gundersen Lutheran Health System of La Crosse, Wis., encouraged every city resident to complete an advance directive, written instructions specifying patients’ end-of-life care preferences.

The result is that doctors there can tailor their treatments to each patients’ desires. It also has hired social workers to talk with patients and families about end-of-life options and provide other support.

Oregon, which also ranks low in intensity of care, has a tradition of debating end-of-life issues. So residents know they have choices, said the California HealthCare Foundation’s Shannon. The state recently pioneered an electronic registry for more than 120,000 POLST (Physician Orders for Life-Sustaining Treatment) forms for the aged or very ill, in which patients set highly specific limits on the kinds of care they desire.

“The best places have a system in place — so that patients can make their preferences clear, and physicians feel trained and supported,” said Dartmouth’s Fisher.

“That’s how people get the right kind of care, when it matters most.”

Contact Lisa M. Krieger at 650-492-4098.

–Data on care of Medicare patients with severe chronic illness or cancer are available for all hospitals with sufficiently large study populations, at www.dartmouthatlas.org.

–Spreadsheet tables are available on its Downloads page; or you can create your own reports using custom report tools.

–To get started, click on “Data by Topic,” then select “Care of Chronic Illness in Last Two Years of Life.” In the “Start a Report” menu, select the “Cancer Care” or “End of Life Care” topic, and choose a measure to explore.

–This story is part of a yearlong series examining end-of-life issues inspired by the emotional and financial costs of the final days of reporter Lisa M. Krieger’s father.