When a physician urges you to "get your affairs in order," it is the unspoken part of his or her message--the imminence of disability or death--that is likely to get top billing in your mind. Getting your affairs in order, however, is still important. And a newly released guidebook can help get you organized for the task.

Long before healthcare reform opponents began warning of "death panels" bent on dispatching the seriously ill more efficiently, members of the National Hospice and Palliative Care Organization regularly got questions from clients about how to assure their wishes are carried out. The hospice group turned to the American Bar Assn.'s commission on law and aging for advice.

The result is a new publication--available for free--called "Legal Guide for the Seriously Ill: Seven Key Steps for Getting Your Affairs in Order." In 51 pages of plain English, the guide provides clear step-by-step instructions on:

--Planning how you will pay for the healthcare you need;

--Making a plan for the management of your health and personal decisions during your illness;

--Making a plan for the management of your money and property;

--Planning for the care of dependents;

--Knowing your rights as a patient;

--Knowing your rights as an employee; and

--Getting your legal documents in order.

The new guide reflects new regulatory and legislative changes, including extended COBRA payments that will help laid-off workers extend their existing healthcare insurance coverage. And for each step, the guide provides many, many resources that can provide further help. It's a must for critically ill patients and their caregivers.

The National Center on Caregiving's Family Caregiver Alliance also has posted some helpful advice for critically ill patients.

For those still worried about the prospect of "death panels," here is the official summary of the House healthcare reform bill that touched off those comments.

-- Melissa Healy  

Near-death experiences are firmly rooted in medical lore. Many people who have been close to death or resuscitated report a similar experience: Feeling an "out of body" experience, seeing a bright light and experiencing a flood of memories. Many people consider the experience spiritual in nature, but a study published online this week reveals physiological markers of the event.

Researchers at George Washington University studied seven patients who had normal brain function but were fatally ill and whose families had chosen to withdraw end-of-life care. The patients, who had various illnesses including cancer, heart disease or multi-organ failure, were monitored with a device that measures level of consciousness as well as an electroencephalogram device that measures brain waves. The study showed that, in each case, loss of blood pressure was followed by a decline in activity related to consciousness. But then a spike of electrical brain activity appeared on the EEG recording in the moments just before death.

This burst of activity in all seven patients was comparable and consistent in duration.

The researchers suggest that because the spike in brain activity occurred when the patient had no blood pressure, patients who suffer "near-death" experiences may be recalling "aggregate memory" stored in the nerve cells of their brains.

"Near-death experiences have been documented by a large number of people," the authors wrote. "Interestingly, these descriptions tend to have a similar theme in that the recollection is vivid and detailed. ... The end of life is a poorly studied area of clinical medicine and deserves more attention."

The study is published online in the Journal of Palliative Medicine.

-- Shari Roan

Photo credit: David Zalubowski / Associated Press

We may not be getting better, but we are getting older. U.S. life expectancy has reached a whopping 78 (77.9 to be precise) years, says a new report from the Centers for Disease Control and Prevention. That's up from a less whopping 78 (77.7 to be equally precise) the year before.

The numbers, released Wednesday, are based on death certificates.

Here's the full report. And here are the highlights as listed in the CDC news release.

Among them:

• The life expectancy of black men reached 70 years -- for the first time.
• Heart disease and cancer are responsible for half of our deaths.

As for the getting better part, that's up to the individual. The report didn't consider it from a population standpoint.

Now for some less-than-traditional views of this news...

From the blog Serious Medicine Strategy, we have this:

Are we overweight, too many of us? Yes. Do many or most of us not get enough exercise? Yes. But are we still doing better? Yes. So let's be careful about pulling apart the system we have.

From EconBlog Review:

So far, so good. Any change in the system MUST continue the health trends described by the CDC. This will likely NOT occur by insuring more people but spending no more money.

And from Speculist:

To look at death certificates in the US in 2007 and use the data to imply that you know anything useful about the life expectancy for anyone born in the US in 2007 is a really strained analysis.

-- Tami Dennis

At the end of a critically ill patient's life, a doctor's recommendation about whether to withdraw life support -- based, one would assume, on expertise and facts -- can get in the way of what really matters: values. That seems to be the opinion of a significant number of people charged with making life-support decisions for others.

Researchers at UC San Francisco asked 169 decision-making surrogates to watch two videos depicting life-support discussions between a physician and a daughter in charge of her father's care. The results, published in the Aug. 15 issue of American Journal of Respiratory and Critical Care Medicine, came as something of a surprise to doctors who have been pushed in recent years to offer more guidance to family members.

In one video, the doctor offered no recommendation to the presumably at-sea relative. Here's a bit of the physician's dialogue: "You’re right; it is a tough decision for you. Again, remember though, that the most important thing is for you to make the choice that your father would have made if he could speak for himself. Or make the choice that’s most consistent with his values. We rely on you to make this decision, and it should be right for him."

In the other video, the doctor made a recommendation to end life support. Here's some of that dialogue: "Based on what you’ve said about your father as a person, I really think that he wouldn’t want to continue with treatment if it meant ending up in a nursing home. I know this is hard to hear, but I would recommend that we focus on keeping him comfortable and recognize that trying to get him well enough to go to a nursing home is not what he would have wanted."

After watching those videos, 56% of the surrogates said they would want a doctor's recommendation about life support; 42% said they would not. For 2%, it didn't matter.

Poor doctors. Here they've been thinking that people across the board would actually want their educated two-cents' worth about whether to withdraw life support.

To be sure, some did. (So, docs, no need to leave everyone floundering about on their own.) But the researchers' very logical conclusions, as stated in the abstract: "These findings suggest that physicians should ask surrogates whether they wish to receive a recommendation regarding life support decisions and should be flexible in their approach to decision-making." Here's the full article, should you want to parse the data yourself.

Perhaps what this study drives home is the need for surrogates to discuss the values of the person they're charged with representing with the person himself (or herself) -- while such discussions are still possible. 

-- Tami Dennis

Photo: Wonder what the doctors think? First, ask yourself: Do you really want to know?

Credit: Associated Press

Once a patient becomes terminally ill, relationships between patients, their caregivers and their primary doctors may become frustrating and uneasy for everyone, according to a new study. The study, an unusual glimpse of what patients and their doctors are thinking and feeling as the end of life approaches, shows that patients sometimes feel abandoned by their doctors.

The study, published today in the Archives of Internal Medicine, involved 55 patients with incurable cancer or advanced lung disease who were expected to live a year or less. Along with the patients, 31 doctors, 36 family caregivers and 24 nurses involved in the patients' care were interviewed. The interviews were conducted at the start of the study, four to six months later and again one year later.

The authors, from the University of Washington, Seattle, revealed that patients feel they lose access to their doctor and his or her medical expertise once they become terminal. "I feel I need more help now, than I did . . ." one patient said, fearing that hospice care would end regular contact with the doctor. Patients may also miss the doctor-patient relationship regardless of whether the doctor is still providing care. "I think that it's important that you still have that contact with them even though there isn't anything they can do to make you better," another patient said.

In contrast, doctors said they were bothered by "losing track" of what is happening to their former patients after active treatment has ceased. However, physicians did not appear to recognize the desire for patients to continue to see them even when there was nothing left for the doctor to do. Caregivers feel a lack of closure, too, and would like a parting phone call or visit from the doctor after the patient's death. Doctors said they often felt they should call the family after the patient's death, but lacked the time to do so or feared becoming too emotional.

"Early on, patients and family caregivers fear that their physician, whose expertise and caring they have come to depend on, will become unavailable," the authors wrote. "Near death or afterward, they may also experience a lack of closure of that relationship."

Medical ethics emphasizes the importance of not allowing patients to feel abandoned when the care plan involves withdrawing disease-modifying treatment. This study indicates that healthcare professionals have room for improvement in making sure their patients feel cared for -- and cared about -- until the end.

-- Shari Roan

Photo credit: Kirk McCoy / Los Angeles Times

One in four terminally ill patients in Oregon who opt for physician-assisted suicide have clinical depression and may not be capable of making an informed, rational decision about ending their lives, according to a provocative study published today in the British Medical Journal.

Eleven years ago, Oregon became the first state to enact a law allowing for physician-assisted suicide. The Death with Dignity Act permits terminally ill patients to kill themselves with a lethal dose of medications prescribed by their doctors for that specific purpose. Much debate has centered on the issue of whether the law protects patients who may be pressured by family members to end their lives or whose judgment is impaired by physical or mental illness.

The study by researchers at Oregon Health and Science University examined 58 Oregon residents who requested physician-assisted suicide or contacted an aid-in-dying organization. The authors used standard measures and interviews with patients to assess their mental states. They found that 25% of the patients could be defined as clinically depressed, which should render them ineligible to receive a lethal prescription. Thirteen of the 58 patients were diagnosed with anxiety.

Some of the patients in the study proceeded with physician-assisted suicide and others did not. Of those who committed suicide, 15 were not depressed and three were. The three depressed patients who killed themselves did so within two months of the research interview.

"The current practice of the Death with Dignity Act may not adequately protect all mentally ill patients," said the study's lead author, Dr. Linda Ganzini.

However, an editorial accompanying the paper noted that only a small number of depressed patients in the study killed themselves, which mirrors research conducted in the Netherlands. Dr. Marije van der Lee of the Helen Dowling Institute in the Netherlands argues that depressed patients are not necessarily incompetent.

"In the Netherlands the most important criteria for euthanasia and physician-assisted suicide is that the patient's suffering is hopeless and unbearable, and that the patient's request is voluntary and well  considered."

For more information and statistics, see the Web page for the State of Oregon's Death with Dignity Act.

-- Shari Roan

Photo: Linda Miles tapes a banner in Portland, Ore., on May 26, 2004, before the announcement that the 9th Circuit Court of Appeals upheld Oregon's Death with Dignity Act. Credit: Don Ryan/AP

It's the toughest conversation in medicine: "You're going to die." Yet when doctors are forthright with their patients about terminal illness and discuss end-of-life issues, the quality of the patient's life and the lives of their loved ones often improves, according to a study published today in the Journal of the American Medical Assn.

The study conclusions were drawn from interviews with 332 patients and their caregivers. After the patient died, investigators reviewed the patient's medical records and interviewed a spouse or family member. Researchers found that patients who discussed end-of-life care with their doctors did not suffer any increased emotional distress because of the frank conversation. Compared with patients who did not have end-of-life discussions with their doctors, the patients were more likely to accept that their illness was terminal and consent to comfort care rather than aggressive, life-extending therapies. They were more apt to enroll earlier in hospice programs, and their family members coped better with their deaths. Family members whose loved ones died in intensive care units were more much likely to be depressed compared with those whose loved ones didn't receive intensive care before death.

Experts on end-of-life care urge doctors, patients with terminal illness and family members to have a conversation about what kind of care the patient wants to receive in the final stage of life, says Dr. Alexi Wright, the study's lead author and a hematology-oncology fellow at Dana-Farber Cancer Institute in Boston.

"I still take a deep breath before I start an end-of-life conversation," Wright said. "We all wish we had different answers and better news, but it's important for us to be both frank and empathetic to give patients and families a chance to prepare for death."

Resources on end-of-life care can be found on the websites of the American Medical Assn. and the National Hospice and Palliative Care Organization.

-- Shari Roan

After a lot of political and medical hoopla in the early months of 2005, Terri Schiavo, died on March 31, at the age of 41. She was institutionalized for the final 15 years of her life after suffering cardiac arrest in 1990. Her CT scans showed severe atrophy of the brain. Electroencephalograms, tests of the electrical activity of the brain, showed nothing but flat lines. An autopsy confirmed that she had suffered irreversible brain damage.* (An earlier version of the story said that the autopsy confirmed she had been in a persistent vegetative state. We've changed the post to more specifically state the findings of the report. Click on Terri Schiavo's autopsy report to see the full results.)

The very public death of Terri Schiavo began a rush on requests for the paperwork needed to order a good death with dignity. People lighted up the phone lines of places like Aging with Dignity, asking for information on living wills.

About that time, a team of researchers from UC San Francisco and the San Francisco VA Medical Center were interviewing 117 people about their end-of-life wishes and their feelings about advance directives, the legal documents which spell out people's desires. Turns out, they weren't so interested in the laws and specifics of advance directives, but they were eager to talk about Terri Schiavo.

"Around the time the Schiavo story peaked, we were making follow-up calls to the subjects in our advance directives study," Dr. Rebecca Sudore, geriatrics research at the VA center and lead author of the story said in a news release.  "Participants had little interest in discussing our study. They just wanted to talk about Terri Schiavo and what they would want done if they were in her situation. It was clear that Terri was on everyone's minds, and that we needed to delve into the impact her story had on patient's decision making about their own end-of-life care."

In a study which appeared in the August online issue of the Journal of General Internal Medicine, with a free abstract available, the researchers found that 92% of those in the study had heard of Schiavo. Among those who had heard of the case, 61% reported clarifying their own end-of-life goals as a result; 66% reported speaking with family and friends about their wishes; and 37% reported wanting to complete and advance directive.

But only 8% actually talked to their doctor about their wishes, and only 3% filled out living will paperwork. Sudore says that physicians should grab educating moments like the Schiavo case and use it to talk directly to their patients about their wishes for the end of their lives. People should also use those moments to have a good heart to heart with family members.

A good place to start is with a document called Five Wishes, legal in 40 states including California. It covers who you want to make healthcare decisions for you if you can't; the kind of medical treatment you want or don't want, such as feeding tubes; and how comfortable you want to be, including how much pain medication you'll accept. And it urges people to consider some difficult emotional questions, such as how you want to be treated at the end of life, and what you want your loved ones to know.

But it won't work if you fill it out in isolation. Talk to your family, loved ones and physicians about your wishes. Update it as the years go by. If you toss it in a drawer, your final wishes will probably be discovered too late.

-- Susan Brink

Photo credit: Chris O'Meara / Associated Press