When patients near the end of life, many doctors say there’s nothing more they can do.

But “there is so much we can do for people at the end of life,” said Dr. Jim Cleary, UW Health’s director of palliative care.

Doctors can provide pain relief, comfort care and guidance to families, Cleary said.

“For a physician to say, ‘There is nothing else I can do,’ is really, I think, a neglect of their physician duties.”

Cleary’s comments are from “Consider the Conversation: A Documentary on a Taboo Subject.” The 2011 film by two Wisconsin men has sparked an initiative to expand advance care planning around the state.

In the first phase of the effort, nurses, social workers and clergy at Madison’s health systems will begin offering discussions about end-of-life decisions to select groups of patients in March. Broader outreach is planned in 2014.

Instead of merely asking patients if they have living wills or health care power of attorney documents, hospitals and clinics will offer discussions about a variety of questions — from whether to resuscitate and ventilate to what kind of people, music and lighting patients want to be surrounded by when they approach death.

John Maycroft, policy analyst at the Wisconsin Medical Society, said a showing of clips from “Consider the Conversation” to the society’s ethics council inspired the group to launch the effort, called Honoring Choices Wisconsin.

Michael Bernhagen and Terry Kaldhusdal made the film on a shoestring budget, with $43,000 in private donations. They’re working on a second film about the doctor-patient relationship.

Bernhagen, director of community engagement at Rainbow Hospice Care in Jefferson, became a hospice worker after his mother died from vascular dementia at age 81.

Kaldhusdal, a fourth-grade teacher in Genesee Depot, lost his brother to pancreatic cancer at 53.

The hourlong film explores why American patients and health care providers are often ill prepared for death. Advance care planning, the film suggests, can prevent unwanted procedures while giving people more control over their final days.

“If you talk with people at a time when they’re not dying and not in crisis,” Bernhagen said, “you can prevent a lot of unnecessary suffering that is certainly physical in nature but also emotional and spiritual and social and financial.”

Public television stations in 29 states have shown the film 366 times, Bernhagen said. It aired on Wisconsin public TV in August 2011 and is expected to be shown at the Beloit International Film Festival in February.

Honoring Choices Wisconsin is based on the Respecting Choices program started in 1991 at Gundersen Lutheran Health System in La Crosse. It’s also modeled after Honoring Choices Minnesota, started by the Twin Cities Medical Society in 2008.

The programs encourage families to talk about what makes life meaningful and worth preserving. They also urge competent adults to fill out forms that legally guide their future medical care if they can’t make decisions on their own.

Patients with advance directives generally prefer comfort care over medical interventions and use $2,000 less doctor and hospital services in the last six months of life, according to Gundersen Lutheran.

They also give family members peace of mind.

A few days after I watched the film last month, I received an envelope from my parents, who are 83, healthy and living in Minnesota.

Through Honoring Choices Minnesota, they filled out health care directives and sent them to my brother and sister and me.

I already had a general sense of their wishes, but now those are written down in detail. I hope we don’t have to make any decisions for a long time. But if or when we do, now it will be easier.

Your relative has spent five days in a hospital intensive care unit, unable to breathe without a ventilator and incapable of making her own medical decisions. Because she appointed you her health care proxy, or simply because you’re her closest relative, the choices about treatments — trying them or stopping them — fall to you.

It’s not a hypothetical situation: One-fourth of elderly people die in an I.C.U. A patient in intensive care on a ventilator probably requires a feeding tube, a catheter, various IV lines. Perhaps her doctors are suggesting dialysis or recommending surgery. There are many choices to be made.

To act as her surrogate is a daunting proposition. “It’s incredibly intense to not only be confronted with loved ones at death’s door, but to have to make treatment decisions you hope are in their best interests — and sometimes you’re not sure,” said Douglas White, a bioethicist at the University of Pittsburgh Medical Center who has studied end-of-life decision-making for years.

Discussions about the end of life, when they happen at all, often focus on what would happen if someone becomes irreversibly comatose or faces a terminal disease. But the victim of a severe stroke, for instance, may remain extremely impaired, physically and mentally, and institutionalized for the rest of her life — yet still be semiconscious.

“Is this a state in which a person would want to be kept alive?” Dr. White said. “It’s a tough question to answer.”

Small wonder that in the study he and his team just published in Critical Care Medicine, more than a quarter of the 230 surrogate decision-makers were not confident they understood what their relatives would want in this very situation — five days in an I.C.U. on a vent. (I would have guessed the proportion to be higher still.)

But the researchers also found some factors that lightened this burden and helped surrogates feel more certain they were following their relative’s wishes. One was having had prior experience as someone’s surrogate. But that wasn’t the most important.

What mattered more? First, having had a previous conversation with the patient about her preferences for treatment. And second, having better-quality communication with the I.C.U. physician. The better the surrogates judged these conversations — Did the doctor use words they understood? Ask about their spiritual beliefs? Talk about when and how their loved ones might get sicker or die? — the less they struggled to make decisions.

We can draw a couple of lessons from this. Medical and legal experts constantly urge families to talk about these issues in advance of a crisis and to document their wishes. Entire campaigns, like Ellen Goodman’s Conversation Project, have formed to promote this idea.

So far, most Americans seem to be ignoring these pleas (including mine). Although the primary reason is probably that nobody likes to contemplate such situations, perhaps another is that we can’t point to much evidence that health proxies and other documents make things go better.

“A lot of people have expressed a lot of skepticism about advance care planning,” Dr. White said. But his findings show that people do their families a significant favor if they talk about their end-of-life preferences. Even if they neglect to put them in writing, their caregivers will feel better able to handle the stressful task of acting on their behalf.

Moreover, the study underscores the importance of the way physicians talk to the families of very sick people. “It suggests that family members don’t come to an I.C.U. with fixed ideas,” Dr. White said. “The way the doctor interacts with them affects the process.”

The higher these surrogates rated their communication with doctors, the more quickly they reached decisions and the less time their loved ones spent on life support. Looking at the patients who died in the I.C.U. — 43 percent of them did — those whose surrogates had better communication spent up to 12 fewer days on ventilators and other technological supports. When a doctor was unclear or perhaps evasive, the patient had a longer I.C.U. stay but died anyway.

“There’s work we can do as doctors to improve the experience for families as well as patients,” Dr. White said. And there are discussions we can have that will do the same.

In 2001, my frail 94-year-old grandmother – a lifelong Wisconsinite – died in a way consistent with her wishes. But it wasn’t easy. It required relentless advocacy by her daughter, who signed “Do Not Resuscitate” paperwork three separate times in one week after my grandmother fell and was taken to the hospital with a serious brain injury.

My grandmother’s loving Brookfield foster home wanted her back with hospice care. Her daughter needed to sign paperwork to confirm her desire to avoid hospitalization and die at home – first at the hospital, then just for the ambulance ride home and again for the hospice admission.

All of this could have been avoided if a system had been in place that made it possible for health professionals to follow a seriously ill patient’s wishes when transferred from one facility to another. With a system in place, patients with advanced illness might have thoughtful conversations with doctors and family about treatments they do or do not want, complete advance directives and appoint trusted loved ones as their health care decision-makers when they cannot speak for themselves.

Despite all this preparation, patient wishes about treatment often are not followed in a time of crisis. Families are often haunted by the belief that they let their loved ones down. They might have promised Mom, who was battling advanced cancer, that they would respect her wish not to be placed on a breathing machine, but when EMS is called, she is placed on a breathing machine and dies in the intensive care unit.

Following years of painful family episodes, local health leaders in La Crosse County found a possible solution: The Physicians Orders for Life Sustaining Treatment (POLST) program. The program provides a forum for families to launch discussions with seriously ill loved ones. It allows patients to talk openly about concerning treatments such as whether they would want chest compressions (CPR) if their heart stops – decisions that should be made in advance of a crisis. Then their physician may create medical orders based on these discussions.

Most important, POLST orders can be used by EMS and emergency departments, and the form travels with the patient from home, to a nursing home or to a hospital, avoiding the need to complete new paperwork every time a person moves.

In the Oct. 17 Journal Sentinel article ”End-of-life medical care initiative prompts worries about abuse,” I learned of concerns about the POLST program raised by Wisconsin Catholic bishops and others. The program is used successfully in many other states. Questions such as those posed in Wisconsin arise from time to time; however, our experience is that once POLST leaders have a chance to communicate about the program and answer questions, these concerns are relieved.

I encourage religious leaders and Wisconsin POLST leaders to work together in creating a program in which adjustments that reflect regional beliefs can be made. I believe that a POLST program can be developed throughout Wisconsin that respects Catholic beliefs.

One of the common misunderstandings surrounds who should have a POLST form. POLST was specifically designed for people facing advanced illness. Unlike advance directives, POLST wasn’t created for healthy people who wish to state their preferences if a health tragedy occurs in the future. POLST was created for people in the final months of life. It is for people actively battling serious disease or frailty.

Second, POLST is not designed to cause or hasten death. POLST can be used to request all interventions or only certain ones. It’s designed to record and give patients a voice in their care near death.

Third, POLST has nothing to do with managing costs. It’s about improving communication and planning. The debate over whether programs like POLST save money is irrelevant because in the end, the program centers on the patient’s wishes.

POLST was created with a respect for life and to honor patients’ wishes by facilitating communication about their care if they are unable to communicate. In short, POLST allows patients – who are unable to speak for themselves – to have their wishes honored as they choose, entirely in accord with their religious beliefs.

Watching a loved one die without dignity is devastating. Sadly, both of my parents experienced prolonged, painful, and what I considered to be, unnecessarily inhumane deaths.

Twelve years ago I attempted to discuss end-of-life planning with my mother and father. Because I believe that death is simply a transition to another plane of existence, I tend to approach the topic in a rather direct and practical way, as was the case with my parents back in 2000. I suggested that they do end-of-life planning in advance, to ensure clarity about their wishes and to avoid any potential family conflict. But because neither of my parents were able to discuss or plan for death, at the end they were each kept alive by artificial means and suffered heart-wrenching deaths.

Following emergency surgery for a ruptured intestine, my 90-year-old father languished on a hospital respirator for more than a month. During this time, I happened upon a documentary on HBO called How to Die in Oregon. The film is about the Death with Dignity laws in Oregon and Washington, which allow mentally competent, terminally-ill adults to voluntarily request and receive a prescription medication to hasten their death. How to Die in Oregon doesn’t tell people how they should die, but it shows how having more options for end-of-life care gives people more peace of mind in their final days.

I had always felt conflicted about physician-assisted suicide. But after watching the How to Die in Oregon documentary, I became convinced that Death with Dignity should be a legal option for any adult facing terminal illness. On November 6, 2012, the Death with Dignity Initiative (also known as Question 2) will appear on the general election ballot in my home state of Massachusetts. The proposed law would allow for a terminally ill adult with six or fewer months to live to be given lethal drugs. The patient requesting the medication must be mentally capable to make medical decisions while consulting their respective doctors. Patients would be required to submit their request orally twice and witnessed in writing, and the initial verbal request must be fifteen days prior to the written request and second oral request. The patient’s terminal diagnosis and capability to make health care decisions must be confirmed by a second doctor.

Supporters of the proposed law argue that the measure would give terminally ill patients dignity and control over their deaths, and would alleviate suffering. Opponents argue that the measure is morally wrong, and that beneficiaries of terminally ill patients could abuse the provisions presented by the proposal. In early October, YouGov America interviewed 498 registered voters in Massachusetts for a poll released by the University of Massachusetts. The survey found 65 percent of the registered voters would vote yes on the Death with Dignity initiative.

Having witnessed the heartbreaking suffering of both of my parents, I feel strongly that I’d want the legal option to utilize the Death with Dignity Act should I ever be faced with a terminal illness. Rather than incur prolonged suffering or be a burden to my family, I would prefer to have a “good death” — have the time and ability to say goodbye to my loved ones, be able to leave when it’s time to go, and not have my life unnecessarily prolonged.

Amy Cirincione hails from a large Italian family, the kind that flocks to the hospital when one of their own is an emergency admission.

“The way we deal with crisis is yelling,” Cirincione said on the last Saturday in August. “I filled out an advance directive to help my husband deal with my family.”

Laughter, smiles and nods filled the Hospice of Humboldt annex where Cirincione is the director of social services. For the past year, she’s used humor, experience and knowledge to help almost 75 people plan for the end of life by filling out an advance directive.

”Anyone over 18 should have one,” she said while setting up for the free, two-hour workshop in August. “You can be hit by a bus or have routine surgery with complications. You need to make sure your wishes are known.”

Advance directives help guide family and physicians in the event the author becomes incapable of voicing or making healthcare decisions.

”Suffering, and fear of suffering, is the reason many people come in to do an advance directive,” Cirincione said. “They don’t want to be in pain. They’re afraid of lying in an endless coma, but they don’t want to miss out on lifesaving treatment. They want a way to start the conversation about everything in between.”

The quarterly workshop moves step-by-step through California’s four-part Advance Health Care Directive, starting with the naming of a healthcare agent and alternates to make decisions for you.

Also covered is how to express wishes regarding the provision, withholding or withdrawal of treatment that keeps people alive, the provision of pain relief, and organ donation.

”There’s a lot of interest, but it can be hard for people to get support for end-of-life planning like this,” Cirincione said.

Her goal is to have attendees leave with at least a draft of their wishes.

”I promise (the workshop) will be more fun that you think it will be,” Cirincione said.

Jessie Wheeler and Kay Escarda thought so. They were among the 11 attendees this go-round.

”It was absolutely excellent and so user-friendly,” Wheeler said. “I was most impressed with the way (Amy) allayed the fears people have about filling advance directives out.”

”It was small, intimate and no one felt intimidated,” Escarda said. “People shared stories and experiences and the teacher was able to use that as a launching pad to cover some of the things people were uncomfortable about.”

One woman spoke of her worries that the advance directive would lead to her asthma not being treated. Another shared the story of a friend who went in for a hernia operation, developed a staph infection, and was conscious but “couldn’t make the body do anything” for a month of fruitless interventions that only delayed death.

”I couldn’t imagine the suffering,” she said.

Advance directives trace their roots to the 1990 Patient Self-Determination Act. The law requires all health-care institutions receiving Medicare and Medicaid funds to inform patients about their right to participate in health-care decisions.

Twenty years later, studies show the prevalence of completed advance directives among adults in the general population to be 5 to 20 percent, but most of those studies took place before the 2005 death of Terry Schiavo, a 41-year-old stroke victim.

Seven years of litigation between her husband and parents ended when the courts allowed him to have her feeding tube removed.

The controversy became a national debate about end-of-life care and the right to die, in large part because Schiavo had no advance directive. The U.S. Supreme Court ruled in 1997 in Washington v. Glucksberg and Vacco v. Quill that competent adults had a constitutional right to refuse unwanted medical treatment and that advance directives were a means of safeguarding that right should those adults become incapable of self-determination.

As medical technology has evolved, so have the means to keep people alive. Intubations, advanced airway interventions, mechanical ventilation, cardiopulmonary resuscitation, feeding tubes and other long-term methods of artificial nutrition can keep patients alive, but it is up to families and individuals to weigh the quality of that life against the treatment options.

CPR, for example, is routinely shown on television as a hospital treatment that involves chest compressions and electricity through an external defibrillator. What isn’t shown or understood are the broken ribs that usually accompany the compression; that it is more successful in some situations than others; that only one in six patients who undergo CPR in a hospital survive to discharge; and that only 7 percent of patients survive CPR and have good brain function at discharge.

”Talk to your physician about whether you are a good candidate for CPR,” said Cirincione. She also emphasized the need to talk to family before a health emergency happens.

The law designates who the next-of-kin are — spouse, children and then parents — but it does not single out which parent or child if a spouse is unavailable or incapacitated, she said. Nor does it care if the next-of-kin shares the patient’s values.

”If you do nothing else but select a health-care agent, you are light years ahead,” she said. “It’s impossible to think about every scenario and what it entails, but you can identify someone you trust who shares your values and will act with your wishes in mind.

”And you can think about designating a second and third backup in case your first choice becomes incapacitated, either because they were in the accident with you or become a puddle of tears.”

Researchers at Oregon Health Sciences University said levels of stress for family members who must decide whether or not life support should be withdrawn from relatives too incapacitated to decide for themselves are twice as high as those found in other crisis events, such as coping with ferry or construction disasters or losing a home to fire.

It was least severe when advance directives were available and most severe when they were absent.

”The stress from guilt and second-guessing are dramatically lower for the health care agent who knows your wishes,” Cirincione said.

As for signing the directive and having it properly witnessed or notarized, Cirincione is realistic.

”A lot of people take it home and will set it on top of the to-do pile,” she said. “Many will never formally do it, but some will articulate what they want and that’s a start.”

Wheeler has already completed her forms; Escarda expects to have hers done by her next doctor’s appointment later this month. Both have had conversations with family. In addition to making sure their wishes are known, they expect the conversations and paperwork will reduce anxiety, prevent turmoil and promote unity among the families and friends responding to a health-care crisis.

”I don’t want my kids to go through what I went through,” said Wheeler. She took care of two parents and a husband. She still recalls her 85-year-old mother begging her to make sure her father didn’t force chemotherapy on her, and a sister-in-law who thought a “do-not-resuscitate” order meant doctors would walk out of the room and quit caring for the patient.

”Those are the fears people have,” Wheeler said. “And there are many more that I wouldn’t have thought of myself. Those fears keep people from signing donor cards and advance directives. People think they won’t get taken care of.”