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!

Talking with teens about death

Study finds that seriously ill young people want to discuss their care, wishes — Barbara Brotman

It is the hardest conversation a parent can imagine: talking to a critically ill child about the possibility of death.

But Deb Fuller, of Woodstock, wishes she had done it sooner.

By the time she and her husband broached the subject with their nearly 13-year-old daughter, Hope, her brain cancer was so advanced that she could barely speak.

Fuller asked Hope if she was afraid; if she was worried about how her parents and brother would cope when she was gone; if she was ready to go anyway.

Hope answered by squeezing her mother’s hand: Yes. Yes. And yes.

“That ended up being one of the best nights we had,” Fuller said. “We all sat around together to the wee hours of the morning and talked.

“But I waited too long. I thought we had more time,” she said.

Hope died within days.

“I wish she could have spoken to me,” she said. “I hate the thought that perhaps she laid there … and worried about it, unable to talk to me about it.”

End-of-life experts say that children should have the opportunity to discuss death in a developmentally appropriate way with a parent or a knowledgeable adult, though such conversations should not be forced.

And a recent study shows that many seriously ill children want to have that talk, and that both they and their parents are relieved afterward.

But parents often don’t know how to begin an end-of-life conversation with their children, said Maureen Lyon, associate research professor in pediatrics at Children’s National Medical Center in Washington and principal investigator at its Children’s Research Institute.

They are often afraid that talking about death will be harmful to the child, Lyon said. And by the time teenagers enter hospice or palliative care programs, which are adept at such conversations, the youths may be too ill to be able to talk or not want to at all.

But it can be a crucial conversation, Lyon said. Important decisions may have to be made, like whether to discontinue aggressive medical treatment or whether they would want to die at home or in a hospital.

Too often, no one — not even doctors — asks these questions of seriously ill teenagers themselves, she said. Without knowing their children’s wishes, families can be torn apart by conflict. And though youths under 18 have no legal standing to direct their medical care, Lyon said, their opinions should be heard.

She and Linda Briggs, associate director of the Respecting Choices program at Gunderson Health System in La Crosse, Wis., designed a way they can be.

They conducted a study in which they used facilitators to guide seriously ill young people and their families through conversations about end-of-life care — the same kind of conversations Respecting Choices offers to adults. At the end, the teens filled out advance directives outlining their wishes.

The study, which Lyon and Briggs presented at the annual conference of the International Society of Advance Care Planning and End of Life Care held recently in Rosemont, found that the youths wanted to be consulted, parents wanted to know their children’s thoughts and both teenagers and their families found the experience worthwhile.

Moreover, the conversations did not cause harm. The young people — who were between 14 and 21 and had either HIV or cancer — were no more anxious and depressed after they talked.

“The assumption is that these conversations will take away hope and raise anxiety. The reality is the opposite,” Briggs said.

Not that the conversations were entirely pain-free.

“The study was much harder on the teens with cancer,” Lyon said. A small percentage of those youths said they had found the talks hurtful. However, they also found them worthwhile. Lyon hypothesized that because they were more ill than the HIV-positive youths, the possibility of death was more real.

But Jessica Gaines, 22, who participated in the study as an 18-year-old who had been treated for Hodgkin lymphoma, said she was glad to be finally asked her opinion.

“When I was going through treatment, I was never asked, ‘Well, what happens if you don’t make it through?'” said Gaines, who lives outside Washington.

Parents were appreciative of the talks too. “I feel like a load was lifted,” one commented in a survey.

Some teens and families declined to participate. Hospices, too, find that not everyone wants to have such talks.

Jeremy Campus, 13, of the Northwest Side, is battling cancer that has recurred a third time. A patient at Hospice and Palliative Care of Northeastern Illinois, Jeremy is well aware of the gravity of his condition. His mother, Annmarie, has let him know that she is available to talk about anything, and his palliative care team is similarly open.

But when it comes to addressing the worst possibility, the quiet-voiced boy sitting at his family’s dining room table is clear.

“I don’t want to talk about it,” he said.

Some parents don’t want their children to talk about it.

“I was against, until the last breath of my son, for anybody to even to mention the word death to him,” said Alla Lyubyezny, of Buffalo Grove, whose son, Max Stine, died of brain cancer five years ago. He was 17 and a patient at Horizon Hospice and Palliative Care.

She didn’t want Max to lose hope, and considered it her duty to protect him from the pain of confronting death.

“Nobody needs to have this information, and to live their last, the month of time that is left to them, with that,” she said. “There are some subjects that are best left alone.”

But children generally know how sick they are, said Jennifer Misasi, head of Horizon’s pediatric program. They sometimes avoid talking about it to protect their parents, she said.

And there is no evidence that talking about impending death in a sensitive and appropriate way takes away children’s or parents’ hope or leaves them devastated, said Dr. David Steinhorn, medical director of the palliative care program at Chicago’s Lurie Children’s Hospital.

“Parents who have the opportunity to have frank conversations in a supportive, open way actually do much better and have fewer regrets when their child is dead than parents who do not talk about it,” he said.

“We’re not saying this should be imposed on anybody,” Lyon said. “But for those teens that want to have a voice, this works.”

“This isn’t about ‘Do you want CPR, yes or no,'” Briggs said. “It’s having them express their goals and values.

“How would you want your mom to make decisions for you? What would you want your mom to know about what kind of life makes sense to you, and what kind of life doesn’t make sense to you?”

Complete Article HERE!


We wind up our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Max, 86, is a retired salesman. He is 5’7” with a stocky build. He has the spry demeanor of a man twenty years his junior. He sports a full head of unusually black hair. “Comes right out of a bottle. Gray hair is for old guys.”

He is quick with a joke and has an infectious Cheshire cat grin. Max had bypass surgery several years ago, and until recently has been healthy and active.

Six months ago he began to complain of stomach pain and noticed that he was losing weight. The doctors found cancer in eighty percent of his stomach. Surgery was out of the question, because at his age it would be too risky. When pushed, his doctors finally conceded that, at best, he might have a year to live. “The news hit me like a ton of bricks. It’s not me I’m worried about, it’s my Sylvia.”

Max is the primary caregiver for his wife of sixty-five years, Sylvia, who recently has had a series of small strokes. Max’s three sons and other family members have been trying to buoy his spirits by reminding him that he is a fighter. “You’ll beat this too, dad. You’ll live to be a hundred.”

Sylvia is also in denial about Max’s condition. She claims he is fine and assures everyone that they are managing just as before. However, when their youngest son came to visit the other day, he found no food in the house and discovered his parents had not eaten in over twenty-four hours. Sylvia broke down and tearfully admitted she had been rejecting relatives’ offers to shop and cook because they were too ashamed to admit they couldn’t care for themselves.

Max was raised a pious Jew in Poland, but now he says he’s an agnostic. “How could there be a God when there is so much pain and sorrow in the world?” Max concedes that instead of planning for his death, he is frozen in a panic about what will happen to Sylvia after he dies. “I know this isn’t helping matters any, but I don’t know what else to do.”


We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Robin, 25, is in recovery and has been for four years. She ran away from home at 16 and lived on the street until she was 19. She was a big-time heroin addict who turned tricks to pay for her habit. “It was a crummy life. I had this total death wish. I shared needles, had unprotected sex, you name it. How or why I survived, I’ll never know. I’ve been raped, beaten, and robbed, each more than once.”

Only after being hospitalized for a severe case of pneumonia and testing positive for HIV did Robin begin to turn her life around. “Is it okay to say that HIV is the best thing that ever happened to me?”

After a year of rehab, she got a job at Safeway and moved into a small flat with her boyfriend Bobby. “We met at an AA meeting. He’s in recovery too.” Her life was finally coming together. “The new HIV drug cocktail I’m on has worked miracles. My viral load went from 700,000 to an undetectable level. I applied to journalism school and am supposed to start in the fall.”

But she’s had to put everything on hold. Bobby wasn’t as lucky. No combination of drugs halted the ravages of AIDS for him. Now 27, he is actively dying. It’s not likely he’ll live out the month.

Despite Bobby’s bad luck, Robin is trying to stay upbeat. “I’ve been through so much to get to this point. I can’t let this setback pull me down again. Bobby would never forgive me.”

She says that watching the man she loves slowly die is the hardest thing she’s ever had to do. “Getting clean and sober was a cakewalk compared to this.” She’s emotionally drained. “It feels like something in me is dying.” Tears well up in her green eyes.

Her moussed platinum hair is scattered wildly on her head. One simple nose ring is all that remains of the dozen or so body piercings she once brandished. A poorly designed tattoo on her upper right forearm peeks out from under her baggy sweatshirt. “I don’t even know how I got this. I was strung out most of the time. Let’s face it, I was a total freak.”


We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Raul, 18, was born with a genetic kidney disorder. He has had countless hospitalizations and surgeries. He has been on dialysis for many years. He had a kidney transplant three years ago, but his body rejected it. Within three months of the transplant he was back on dialysis. “Man, I am so tired of living in a body that never works right.”

Raul is as thin as a reed and his skin has the ashen pallor of one who is near death. His chronic pain has aged him far beyond his years. During his interview, Raul is having difficulty making himself comfortable. “I’m havin’ a bad day. The pain is real bitchin’. It ain’t like there’s some days when there’s no pain, only most of the time it ain’t this bad.”

Raul is exhausted and exasperated. Many family concerns weigh upon him, adding anxiety to his already difficult life. “My parents are heavy into the church. I am too, but not like them. They keep telling me it would be a sin to give up. But hey, man, how can it be a sin to wish this shit would end? It’s not like I haven’t tried. I’ve been in the hospital so many times I can’t even count ‘em.”

Raul’s anger and frustration are written all over him, but his machismo prevents him from revealing too much of his inner struggle. His teeth clench against the pain, but then his eyes brighten for a moment. ”Hey, ya know there’s this real hot babe in my school. She’s so fine. I try to talk to her, but she don’t like talking to me. I think she’s afraid I’ll give her some kind of sickness or something.” Raul has never had a girlfriend. “I never even kissed a girl, ‘cept my sister, and she don’t count. What if I die before I get some lovin’? That would really top off this crummy life.”

Only one of his sisters knows that he wants to do this group. “Amelia is the only one who tells me it’s okay to feel the way I do.” Raul is looking for some support for expressing his feelings. He hopes this group will provide that. “I want to be able to talk about dying with my family, but I don’t know how. We’re all real messed up, I guess.”


We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Mia, 31, is a graduate student in Medieval Languages at Stanford University. Several months ago, she landed in the ICU, near death from an acute lung infection. While she was in the hospital she was diagnosed with a rare lung disorder, which was the source of the initial infection. Since that initial hospitalization, she needs to use oxygen and was advised to seriously consider a lung transplant if she expected to live past 35. Mia reluctantly uses the oxygen, but she won’t consider the transplant. She has chosen a different path.

Mia regularly consults a doctor of traditional Chinese medicine, which is consistent with her cultural heritage. She uses a wide array of other modalities, including vitamins, acupuncture, meditation, yoga, massage, and biofeedback. “This is the way I want it. These things make me feel involved and empowered, and that’s more important than anything else.”

Although she likes her American doctor, western medicine leaves her feeling cold and disconnected. She felt robbed of her dignity in the hospital. “They didn’t see me, they just saw my disease.”

Mia was born in Hong Kong, the only daughter of socially prominent and professionally successful parents. She’s lived a charmed and pampered life, but now she knows the downside of living a life of privilege. “Nothing in life prepared me for this kind of adversity.”

Despite her frailty, she has a decidedly tomboyish appearance. She is lively and animated when she speaks. Sometimes she even gets tangled in the plastic tubing that runs from the ever-present oxygen canister to her face. “I haven’t got the hang of this yet. Can you tell?”

The pulse and spritzing sound of the oxygen keeps time with her labored breathing. “I once felt immortal, which now seems weird because I’m starting to realize I could be quite dead in a year.” She has an overriding dread of her final days. “I can’t even imagine what it will be like. I’m sure it’ll be just horrible. I panic when I have to struggle for a breath now. What will it be like then? I sometimes get so frightened I cry.”