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.

These tips come from my experience of being with hundreds of people as they have died and with the thousands of family members who have witnessed this event. Consider using these tips for dying well … and for living well!

10. Talk about what you do and don’t want.

Tell your family, friends and doctors how you want to be treated and what kind of treatments you want or don’t want! Consider a living will or other advance directives so that your wishes will be known prior to end of life choices. Consider your needs: physical, emotional and spiritual because they all impact your final days.

9. Have a life review. Recall significant and meaningful events .

Share your stories either verbally or written with your loved ones, in a journal or on tape. As you do this forgive yourself and others for everything! Let go of judgments. Judging people and events take up precious energy that could be spent loving instead. Release the judgments and allow yourself to be fully present to what is in your life right now.

8. Express gratitude daily – for something, anything!

This will help move you from the context of small self who is dying to connect with the bigger part of Life that is surrounding us always. Expressing gratitude creates a positive shift in our mental state, which in turn has positive physical benefits.

7. Connect with something more than yourself.

Connect with your family, your friends, nature, art, pets, your God, Spirit, your ideals. Allow yourself to belong to something more than yourself so that when you die, you will be connected to those things in which you invested your time and energy.

6. Be authentic and transparent.

Say what you mean and mean what you say. Express yourself courageously holding nothing back. Your vulnerability will be rewarded with intimacy. Allow yourself to feel your feelings – all of them. You are allowed to be just as you are. Give yourself permission to explore this concept and to explore really being YOU! This is the time to do it.

5. Be optimistic and realistic about what is happening.

Expect the best while being prepared for the worst. This can be challenging but from my experience, extremely rewarding. Put your affairs in order. Write your will, choose a mortuary, talk about your funeral, talk about what’s happening in order to bring understanding to your experience and alleviate confusion for your loved ones.

4. Accept what is as it is happening.

No one can really know what you are going through. This is your private journey. All we can do is support and love you. It is true that we are all going to die, but not all of us have the experience of the deathbed. As you find yourself contemplating death and accepting this inevitability look for the places inside that fight against this reality. There is a quote I like that captures this theme, “When we stop opposing reality, action becomes simple, fluid, kind, and fearless.” ~ Byron Katie

As you gracefully yield to your body’s end, you may indeed find peace, joy, and pleasures in the days you have left surrounded by love and loved ones.

3. Say please and thank you.

These words express kindness, respect, and appreciation and will elicit positive responses from everyone who is close to you. The energy behind these words is powerful and respectful. Even if someone has to wipe your butt in your final days you can still maintain a dignified experience simply by the energy of your presence.

2. Look people in the eye.

People generally don’t know how to behave around someone who is nearing the end of life. This is an opportunity to “get real”, to allow yourself to be seen, really seen. Gazing into someone’s eyes without words allows our hearts to connect at a very deep level and can be very satisfying and rewarding.

1. Breathe.

While you have Life moving through you, allow it to move through you. When you feel tight or anxious: breathe. When you feel sad or tired: breathe. When you feel angry or hurt: breathe. Consciously breathe and open yourself up to the present moment. Allow Life to reveal its preciousness to you for as long as you can and with all of the awareness you have. Live until you die.

Terminally ill cancer patients are less likely to get aggressive end-of-life treatment, such as chemotherapy in the last two weeks of life, when they talk with their doctors early on about how they want to die, according to a new study.

Treatment aimed at keeping those patients alive at the end is often expensive and may not improve patients’ quality of life or comfort. Such therapies usually involve more time in the hospital rather than at home or in hospice care.

“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said Dr. Jennifer Mack, the study’s lead author from the Dana-Farber Cancer Institute in Boston.

“We should at least consider having these discussions soon after diagnosis if we know that a patient has incurable cancer,” she told Reuters Health.

Her team’s analysis involved 1,231 people with advanced lung or colon cancer who died over a 14-month period during a larger cancer study. Researchers interviewed patients or their caregivers about whether and when the patients had discussions with their doctors about end-of-life care.

Mack and her colleagues also checked medical records for signs of those discussions and for any treatment and hospitalizations cancer patients had in their last month of life.

They found that most patients – 88 percent – had end-of-life discussions, but more than one-third of those took place less than a month before the patient died, when their health was likely already deteriorating. Close to two-thirds of the talks happened while patients were in the hospital.

Almost half of study participants received aggressive, life-prolonging care, Mack’s team reported Monday in the Journal of Clinical Oncology.

Those who’d had end-of-life discussions more than a month before dying were 50 to 60 percent less likely to get that extra treatment than patients who put off those talks or didn’t have them at all.

Patients (and their caregivers) who reported having the discussions with doctors were almost seven times more likely to end up in hospice than those who didn’t recall end-of-life talks.

“A lot of patients don’t want (aggressive treatment), but they don’t recognize that they’re dying or that this is relevant for them,” said Dr. Camilla Zimmermann, head of the palliative care program at University Health Network in Toronto.

But, she told Reuters Health, “The earlier you discuss these things, the more options you have. If you wait too long, you end up having these discussions with someone you don’t know, that you just met, in an inpatient setting,” instead of with your primary doctor.

Mack agreed.

“If we start these conversations early, then patients have some time to process this information, to think about what’s important to them (and) to talk with their families about that,” she said.

Aggressive end-of-life care is also expensive. According to data from the Dartmouth Atlas of Health Care, 32 percent of total Medicare spending goes to caring for very sick patients in their last two years of life, often because those people are in and out of the hospital. In the early 2000′s, that spending was equal to about $46,000 per chronically-ill patient.

Zimmermann, who wasn’t involved in the new research, believes it’s never too early for doctors, patients or caregivers to initiate discussions about end-of-life preferences – even if it can be an uncomfortable topic.

“There are many opportunities while that incurable illness is still being treated… to also focus on what happens if this doesn’t work,” she said.

“I think people are afraid that bringing up these discussions is going to make them die. Bringing up these discussions is really going protect them from an outcome they don’t want in the end.”

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.