Booster Shots

Oddities, musings and news from the health world

Category: end-of-life

California program helps people record wishes at end of life

July 2, 2010 |  6:00 am

Oldage A program used in California to help nursing-home and terminally ill patients express their wishes regarding treatment at the end of life results in the type of care patients want and expect, maintains a new study.

The program is called Physician Orders for Life-Sustaining Treatment and has been adopted in many nursing homes, hospitals and long-term-care facilities in California beginning in January 2009. The program involves an innovative medical form, that is signed by a doctor, allowing patients to specify what kind of care they want at the end of life, such as feeding tubes and other medical interventions. The form was designed 20 years ago in Oregon because of concerns that traditional "do not resuscitate" orders and advanced directives did not fully communicate patients' wishes for many situations and types of treatments.

The multi-state study, published Friday in the Journal of the American Geriatrics Society, found that patients with the Physician Orders for Life-Sustaining Treatment forms had much less unwanted hospitalization and medical interventions. For example, 98% of people with the forms had orders about medical interventions in addition to resuscitation -- compared with 16% of residents without these forms.

The form "allows patients to tell their health care professionals exactly what they want, so providers know patients' wishes no matter what level of treatment they are seeking," Dr. Susan Tolle, a co-author of the study and director of the Center for Ethics in Health Care at the Oregon Health & Science University, said in a news release.

Efforts to increase awareness about the program are being led in California by the Coalition for Compassionate Care of California and the California HealthCare Foundation. Information and opportunities to learn about the program can also be found at this website.

-- Shari Roan

Photo: Justin Sullivan / Getty Images

Book Review: 'Passages in Caregiving' by Gail Sheehy

May 22, 2010 |  9:00 am

Book jacket of Passages in Caregiving-1 Caring for a loved one with a chronic illness -- a parent, partner, sibling or child -- is a role no one aspires to but many of us will take on.

In her superb new book, "Passages in Caregiving," Gail Sheehy writes that someone is serving as an unpaid family caregiver in almost one-third of American households. It's a job that lasts an average of five years.

"Nobody briefs us on all the services we are expected to perform when we take on this role," she writes.

That statement is no longer true, for "Passages in Caregiving" -- written from Sheehy's personal experience supplemented by a generous dose of reporting -- does it well. Her book outlines the road that awaits caregivers and gives practical advice to help them on the journey. It's an ambitious and readable blend of memoir, reportage, consumer advice, pep talk and love story.

Sheehy, author of the bestselling 1976 book "Passages" and many other books and articles, was married to Clay Felker, the legendary editor who founded New York magazine and cultivated such writing talents as Tom Wolfe, Jimmy Breslin and Gloria Steinem. They were a high-profile New York media couple with a life many would envy.

Then one day a phone call came that changed everything. It was a cancer diagnosis for Felker. As they absorbed the news and started making the rounds of doctors, Sheehy realized she had taken on a new role: family caretaker. She thought this would last six months to a year and then their life together would go back to normal. It didn't. 

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It's hard to predict what a person's last year of life will be like

April 1, 2010 | 10:47 am

Oldage It's natural to assume that we see death coming in old age; that we slow down, become disabled and then die. But that's not necessarily the case, according to an enlightening study published Thursday in the New England Journal of Medicine.

Researchers identified five distinct trajectories in the last year of life -- no disability, catastrophic disability, accelerated disability, progressive disability and persistently severe disability. But they found these trajectories varied widely among people and their conditions. Only advanced dementia was really predictable. Those people had high levels of disability throughout the last year of life.

For five other categories (cancer, organ failure, frailty, sudden death and other conditions), from 26.8% to 80% of people were not disabled or had very low levels of disability until only a few months before death. Overall, more than half of the 383 study participants were not disabled 12 months before death. A high number of people who died of cancer, for example, were not disabled during the last year of life.

"These results indicate that for most decedents the course of disability at the end of life does not follow a predictable pattern based on the condition leading to death," the authors, from Yale University School of Medicine, wrote.

The study raises some important points. First, for policymakers, it's hard to know how to allocate resources for healthcare services when disability varies so much in the last year of life. Second, for patients and families, the unpredictable nature of this final year suggests the need to plan for a variety of scenarios. Another study, also in the current issue of the New England Journal of Medicine, found that advance directives, documents that specify the kind of medical care desired, or not desired, at the end of life, work fairly well and are valued by patients and their families. Given the unpredictability of the last year, it seems prudent to have an advance directive prepared in old age, no matter how good you're feeling.

For more on end-of-life care, see this recent L.A. Times Health section.

-- Shari Roan

Photo by Justin Sullivan / Getty Images

The death of a word: euthanasia

March 29, 2010 |  9:03 am

Euthanasia People disagree vehemently on issues surrounding death and dying, such as what palliative and medical measures can be appropriately taken at the end of life. But use of the term "euthanasia" doesn't advance the intelligent discussion of end-of-life care, say editors of the Canadian Medical Assn. Journal.

In a commentary published Monday, Dr. Paul C. Hébert and Dr. Ken Flegel argue that the meaning of euthanasia "has become frayed and torn. It mixes ideas and values that confound the debate about dying. It is time to discard it."

Euthanasia originally conveyed the idea of a gentle death. The term eventually evolved and took on another meaning: actions that bring about a gentle death. According to the authors, however, the meaning of the term has broadened further -- and has become clouded -- to encompass actions that involve providing relief to dying people. For example, a survey of doctors in Quebec last year found that 81% said they had practiced euthanasia, and that 48% said palliative sedation -- in which medication is given to provide comfort but which may hasten death -- can be likened to euthanasia.

That's the wrong interpretation, Hebert and Flegel write, saying that "...administering enough narcotics to relieve pain in patients with cancer and adding enough sedation to enable comfort and minimize agitation is appropriate and compassionate care, even when the amounts required increase the probability of death."

Instead of calling such an action euthanasia, health professionals should avoid terms that mean different things to different people, the editorial states. Instead, it advises, doctors should describe their proposed action and its intention and avoid loaded words.

-- Shari Roan

Photo credit: Eric Boyd / Los Angeles Times

In case of serious illness, take one of these to protect your legal rights

December 28, 2009 |  2:37 pm

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  

An explanation for near-death experience

October 7, 2009 |  7:00 am

Sunset 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

The new data on U.S. life expectancy -- and what can be made of it

August 20, 2009 |  6:01 am

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

Look here, doc, whose life-support decision is this anyway?

August 10, 2009 | 12:13 pm

Doctors 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

Terminally ill patients feel abandoned by doctors

March 9, 2009 |  1:22 pm

HospiceOnce 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

Study criticizes Oregon's Death with Dignity Act

October 8, 2008 |  1:00 pm

Suicide1 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


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