End of life options worthy of attention

By Joe Timmerman

Death is a very difficult topic to discuss. It’s not a subject that most people enjoy pondering. It is especially difficult to discuss with someone whose death may be imminent. Like many issues, it might be easier to just avoid the topic altogether. However, as is often the case, pretending the issue doesn’t exist won’t make it go away, and can often make the end result more difficult to deal with. Thus, the news the Madison medical community will start providing end-of-life planning as a standard patient service is welcome, indeed.

End-of-life planning involves sitting down and coming up with an “advanced directive.” An advanced directive is essentially a set of written instructions regarding a patient’s preferred medical care that are carried out in the event the patient is no longer able to make those decisions. For example, a patient might specify that, if they should enter into a vegetative state, they should be taken off the ventilator and allowed to die.

Preparations for death, such as end-of-life planning, are becoming increasingly accepted in the medical community. According to guidelines published by the American Society of Clinical Oncology, all terminally ill patients should sit down and discuss their end-of-life wishes with their family and health care team.

Advanced directives are beneficial for a variety of reasons. To begin with, people should have their health care administered according to their own preferences. If someone wishes to be kept alive on a ventilator, then he or she should be able to. If someone wishes instead not to be put on a ventilator, then they shouldn’t have to be put on one against their will. Just because someone can’t communicate his or her preference doesn’t mean it shouldn’t be honored. Either way, this is utility enhancing for the patient.

As for the health care provider and the patient’s family, they aren’t forced to make life-or-death for someone else. Making these decisions are, as one might expect, extremely taxing, and everyone is better off if the patient makes his or her own decision ahead of time rather than leaving it to a third party. In a powerful Time Magazine article, Joe Klein recounts his difficult experience making these decisions for his own parents. As he writes, “I spent the next five months as a death panel for both my mother and my father.” He later writes he was “extremely fortunate” to transfer his ailing parents to a health care provider that was much more willing to candidly discuss death.

Coming up with an advanced directive also helps to keep health care costs down. CBS News reports Medicare spent $50 billion in 2009 on doctors and hospitals over the last two months of patients’ lives. The kicker? “20 to 30 percent of these medical expenditures may have had no meaningful impact.”

Over the course of one year, Medicare alone spent as much as $15 billion of treatment had no positive effect on patients’ quality of life. This is a prime example of wasteful spending that, in today’s age of fashionable austerity, needs to be eliminated. A significant portion of this spending could be eliminated if people were only kept alive as long as they wished to be.

It might seem that doing anything less than everything to extend a person’s life would be unethical. However, if the person doesn’t want to be kept alive though extraordinary measures only to suffer for longer, their wish should be honored. This can only be accomplished through people having candid discussions with their families and doctors. The fact that local health care providers are starting to encourage these discussions is good news for all Madisonians.

A push to encourage end-of-life discussions

By Kay Lazar

Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace, an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Complete Article HERE!

A DNR Tattoo? Really? Great Teaching Image for Geriatrics or Palliative Care

by: Alex Smith

Perhaps you have said, or heard someone declare, “I want DNR tattooed across my chest!”

Well, someone actually had it done. See this image in JGIM of the tattoo and the unusual story behind it. In this case, the DNR tattoo was the result of a lost bet in a drinking game – bad idea jeans – the patient actually wanted to be full code!

In an accompanying editorial, Bernie Lo and I describe the problem with actually tattooing DNR across your chest. As we say, the idea is intuitively appealing, but flawed as policy.

This could be used a teaching image about respecting individuals’ rights to avoid resuscitation. The idea is to provoke a thoughtful discussion. Questions for trainees could include:

  • What is behind the idea of the DNR tattoo? Why would someone say that, or do it?
  • Imagine you are seeing a new patient who arrests in front of you. Preparing to do CPR you see a DNR tattoo on the chest. How do you respond? Why? Should DNR tattoos be respected?
  • What can we do to protect the interests of people who really do not want to be resuscitated?
  • Should we as a society put greater ironclad protections in place for people to irrevocably fix their code status at DNR? What are the risks? What if someone codes from anaphylaxis? Chokes on some food in front of you?
  • What do you think about allowing leeway or flexibility in decision making? In all cases? Giving the surrogate leeway? The clinician? Do the advance directive forms or POLSTs you use allow for leeway? Should they?
  • What do you think about Ulysses contracts? (Then Ulysses said, “Eurylochus, come quickly! Tie me to the mast, for I shall hear the Sirens song and live!”). Caringadvocates offers such documents (run by frequent GeriPal commenter Stan Turman). Example: do not give me food or water when I have advanced dementia, no matter what I say or do.

Feel free to share your teaching experiences in the comments. I think the geriatrics and palliative care communities really appreciated the discussion about how to use this video from a previous post as a teaching tool.

Complete Article HERE!

Advance Directives are the beginning of care, not the end

Jerome Groopman, MD, FACP, and Pamela Hartzband, MD, FACP

One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.

In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.

Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.

Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.

This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”

After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.

Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.

This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.

The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.

The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.

This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”

Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”

Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.

Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.

Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.

Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?

Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.

While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.

Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.

Complete Article HERE!

Mapping Your End-of-Life Choices

By Jane Brody

Robert H. Laws, a retired judge in San Francisco, and his wife, Beatrice, knew it was important to have health care directives in place to help their doctors and their two sons make wise medical decisions should they ever be unable to speak for themselves. With forms from their lawyer, they completed living wills and assigned each other as health care agents.

They dutifully checked off various boxes about not wanting artificial ventilation, tube feeding and the like. But what they did not know was how limiting and confusing those directions could be.

For example, Judge Laws said in an interview, he’d want to be ventilated temporarily if he had pneumonia and the procedure kept him alive until antibiotics kicked in and he could breathe well enough on his own.

What he would not want is to be on a ventilator indefinitely, or to have his heart restarted if he had a terminal illness or would end up mentally impaired.

Nuances like these, unfortunately, escape the attention of a vast majority of people who have completed advance directives, and may also discourage others from creating directives in the first place.

Enter two doctors and a nurse who are acutely aware of the limitations of most such directives. In 2008, they created a service to help people through the process, no matter what their end-of-life choices may be.

The San Francisco-based service, called Good Medicine Consult & Advocacy, is the brainchild of Dr. Jennifer Brokaw, 46, who was an emergency room physician for 14 years and saw firsthand that the needs and wishes of most patients were not being met by the doctors who cared for them in crisis situations.

“The communication gap was huge,” she said in an interview. “The emergency room doctor has to advocate for patients. I felt I could do that and head things off at the pass by communicating both with patients and physicians.”

Sara C. Stephens, a nurse, and Dr. Lael Conway Duncan, an internist, joined her in the project. Ms. Stephens flew to La Crosse, Wis., to be trained in health care advocacy at Gundersen Lutheran Health System. Through its trainees, tens of thousands of nurses, social workers and chaplains have been taught how to help patients plan for future care decisions.

“People often need help in thinking about these issues and creating a good plan, but most doctors don’t have the time to provide this service,” said Bernard Hammes, who runs the training program at Gundersen Lutheran. “Conversation is very important for an advance care plan to be successful. But it isn’t just a conversation; it’s at least three conversations.”’

A Necessary Decision Process

Dr. Hammes, editor of a book, “Having Your Own Say: Getting the Right Care When It Means the Most,” said that while he is especially concerned that people 60 and older make their wishes known to family members and develop a cohesive plan, this should be done by someone who develops a serious illness at any age.

“People need to sit down and decide what kind of care makes sense to them and what doesn’t make sense, and who would be the best person to represent them if they became very ill and couldn’t make medical decisions for themselves,” Dr. Hammes said.

“If, for example, you had a sudden and permanent brain injury, how bad would that injury have to be for you to say that you would not want to be kept alive? What strongly held beliefs and values would influence your choice of medical treatment?”

Divisive family conflicts and unwanted medical interventions can be avoided when people specify their wishes, he said. His own mother “told us that if she had severe dementia, it would be a total waste of her life savings to keep her alive. She would rather that her children got the money.”

“We help people work through the decision process and involve those close to them so that the family shares in their goals,” Dr. Hammes said. “When patients have a care plan, the moral dilemmas doctors face can be prevented.”

At Good Medicine in San Francisco, Dr. Brokaw and her colleagues have thus far helped about two dozen people explain their goals and preferences, at a cost of $1,500 for each person.

“In today’s health care systems, families will be asked when patients can’t speak for themselves and many families are very unprepared to make these decisions,” she said.

Her colleague Ms. Stephens pointed out that only about a quarter of American adults have advance care directives of any kind, and only half of them have them in hand or know where they are should they be needed.

Furthermore, only 12 percent had any input from a physician when filling out the forms, which are often done alone or with a lawyer.

“Your lawyer shouldn’t be writing a medical contract any more than you’d want your doctor to write a legal contract,” Dr. Brokaw said.

The kinds of questions she said people should consider: What was your state of health at the start of the illness? What state are you likely to be in at the end of the illness? What, if anything, can provide a soft landing?

Proper Planning Helps Avoid Troubles

Judge Laws writes in the directive he is preparing, “After family, I value clarity of mind and the capacity to make decisions. To live well is to continue to possess the ability to converse, to read, to retain what I learn and to coherently reflect and understand. I do not want my life prolonged if I undergo a marked lessening of my cognitive powers.”

Judge Laws also does not want “to live with severe, distracting pain.”

His directive will request that any treatment he receive be compatible with those goals. He also writes that he expects his sons and his wife to support his decisions even if they disagree with them and not to let any quarrels over his care cause a rift in the family.

Studies have shown that advance care planning reduces stress on patients, their families and health care providers. It also results in 30 percent fewer malpractice suits, greater patient and family satisfaction, and a lower incidence of depression, drinking problems and other signs of complicated grief among survivors.

Ms. Stephens said that advance directives are “organic documents that can be changed at any time if circumstances or a person’s wishes change.” They should be reviewed at least once every 10 years, she added.

Complete Article HERE!