No one likes talking about dying, but Stephanie Pincus, MD, MBA, believes we all need to do more of it. Pincus is one of the key people who participated in the work that resulted in  a new Institute of Medicine committee tasked with exploring and preparing a report on the current state of end-of-life care in the country. The committee’s ultimate goal is to ensure that people are able to die as they wish.

“People do not want to die alone, in a hospital bed, hooked up to 15 different machines, with buzzing in their ears. They want to be with their families in familiar surroundings, able to say their good-byes peacefully,” Pincus, who recently gave a talk at the medical school sponsored by the Stanford Palliative Care training program, told me.

“Until about 100 years ago death was part of life. In early times in the U.S. when someone died they were laid out on the kitchen table,” she continued. “But as we moved medical care to the hospital, death became isolated and isolating. We need to reclaim death from the hospital and reintegrate with the family.”

The medical field’s emphasis on providing appropriate end-of-life care dates back to around 45 years ago, with the start of the hospice movement, Pincus said. (Hospice focuses on symptom management, instead of disease management, with a goal of helping the patient “have peace, comfort and dignity” at the end.) But there was a recognition in the late 1990s that medical professionals didn’t always fully understand or carry out their patients’ wishes, and the IOM issued a major report on the issue in 1997.

“Approaching Death: Improving Care at the End of Life” laid out a number of principles and recommendations, among the main points being that people should expect high-quality compassionate care at the end of life and that health professionals should “understand that [those who are terminally ill] are not patients for whom ‘nothing can be done.’” The report also recommended the establishment of palliative care as its own specialty.

But, Pincus said, “fifteen years later, we still have a lot of issues with getting end-of-life care.” As described on the IOM’s website, “coordinated expert, compassionate care for people dying from chronic diseases continues to challenge the American health care system.” And Pincus said the biggest hurdle to this type of care is the recognition that what often happens at the end of life - that is, the administering of medical care when there is no hope of a turn-around – “is bringing unnecessary pain and suffering to patients.” In addition to this costing a lot of money, Pincus said dying patients are subjected to burdensome and ineffective technical interventions that erode the quality of their lives.

Pincus noted that in recent surveys, 86 percent of people said they believe end-of-life care should be a priority, and more than 90 percent believe hospice should be a priority. In their report, then, the committee members will evaluate strategies and provide policy and clinical recommendations to improve the current situation and to “integrate end-of-life care into a person-centered, team-based framework.” There will also be a public-communication component to the report, Pincus said, referencing the recent controversy over “death panels” and the fact that misinformation and “inflammatory language is still embedded in people’s heads.”

Pincus also mentioned the importance of educating families on the benefits of letting a loved one go peacefully, instead of pushing for unnecessary medical interventions at the end: “We need to work on making sure that those family members understand that as death is approaching, nothing has a realistic chance of being successful.” And she urged for early dialogue about the patient’s wishes: “Most family members want to do what the dying person wants. But it’s important that discussions begin way before the end of life to understand what that really is.”

Eighty-seven-year-old Dorella Johnson is tired.

She’s tired of suffering through multiple blood-draws every day to treat the chronic illnesses that have landed her in Providence Medford Medical Center. Her deep and fragile veins make it difficult to insert needles into her arms. Her arms are splotched with large purple and black bruises that stretch from her wrist all the way past her elbow.

She’s tired of spending her days in a hospital bed and not at the Medford home she and her late husband of 68 years, Roger Johnson, lived in for several years.

Her sister Ruth Wineteer came to Medford from her home in Eastern Oregon to be there when a decision was made on Johnson’s fate.

“She told me that she didn’t want any more shots, no more poking,” Wineteer said. “She just said, ‘No more. It hurts.’ ”

Johnson knows she has reached the end of her life and she wants to live out her final days in relative comfort, away from hospitals and doctors.

It is the job of Providence’s palliative care program to ensure that Johnson’s wish is granted.

“I’m going back home,” she said.

Providence is expanding its palliative care program with help from a $205,000 grant from the Cambia Health Foundation, said Vicki Chamberlain, Providence’s marketing and public relations director.

Part of the grant will go toward educating local residents on what palliative care is, and what it provides for the community, Chamberlain said.

Some are under the impression that palliative care deals only with end-of-life issues such as untreatable cancer, end-stage diabetes and Alzheimer’s disease.

Palliative care, which is sometimes confused with hospice care, refers to the overall attention physicians pay to patients’ suffering and treatment. Many of these patients are not terminally ill but have debilitating symptoms or are enduring grueling treatments such as chemotherapy. To be sure, hospice is under the palliative-care umbrella.

“We have patients who are receiving very aggressive chemotherapy treatments and they suffer from things such as depression along the cancer journey,” Chamberlain said.

“What we do is get them help to deal with this pain, so that it will improve their treatment outcome. Many of these people will make a recovery from the cancer.”

People who suffer from the effects of their disease lose jobs and can become withdrawn from their families, said Michael Christensen, a nurse practitioner brought in from Stanford University’s hospital to become Providence’s palliative care coordinator.

“We work to treat any life-limiting or life-threatening issue and get the patient in the process as early as possible to keep up their quality of life,” he said.

The goal is to get patients out of intensive care sooner, instead of letting people languish with chronic diseases.

Christensen believes palliative care will continue to grow as a medical specialty because medical advances have prolonged patients’ lives.

“We can save you from the massive heart attack and cure other serious illnesses that would have been fatal several years ago,” he said. “But now we see people living long enough to where they suffer from chronic diseases toward the end of their lives.”

Sometimes, as in Johnson’s case, these ailments stack up on patients and ruin their enjoyment of life. They may decide that aggressive treatments in a hospital are not worth the pain and anguish.

“We want to make sure that we are not sacrificing quality of life for quantity of life,” Christensen said. “For Dorella, her type of treatment would involve these very painful blood tests.”

When Johnson made it known she no longer wished to endure the treatments, a meeting was called with the hospital’s palliative care team, which consists of doctors, a social worker, a psychologist and a chaplain for spiritual guidance.

The team meets with the patient and his or her family and a decision is made on how best to make the transition from treatment to hospice care.

“We want to involve the family as early as we can,” Christensen said. “But ultimately, it’s the patient’s decision.”

Wineteer was at the meeting with the palliative care team and Johnson. She said the final decision was “hard,” but she respects her sister’s right to live out her life on her own terms.

“She was very clear about what she wanted,” Wineteer said. “I was impressed by the process and I think it’s the right thing to do.”

Providence’s palliative care team visits with about 20 patients per week. Most are people suffering from chronic lung diseases brought on by smoking or exposure to harsh chemicals while at work.

“We have a lot of people who worked at mills years ago when they didn’t have the safeguards they do now,” Christensen said. “They have shortness of breath and want to see their quality of life improve.”

Oregon is among the leaders in the United States for palliative care.

A poll released in 2011 by the National Journal showed that Pacific Northwest residents largely support end-of-life care.

In addition, the National Palliative Care Research Center gives Oregon an “A” for the access its hospitals provide to this care.

Rogue Regional Medical Center in Medford received a $238,000 grant from the Regence Foundation in April 2011 to start its own palliative care program. Hospital staff at the time said the goal was to help more than 500 patients over two years.

Palliative care programs remain popular in the West and in many parts of the Midwest and East Coast. The rural South struggles with maintaining such programs, according to the National Palliative Care Research Center.

Palliative care requires expensive resources up front because it involves treatment from several different professionals.

“You have a group of people providing you care and each one of them involves a charge,” Christensen said. “Ultimately, palliative care will end up saving money because people won’t be receiving treatments that won’t do anything to increase quality of life. There also won’t be unnecessary lab tests and time on a respirator.”

In other words, the palliative care team educates patients on the path they can choose at the end of their lives. Many people choose not to continue with heavy treatments that will do little to make their final days pleasant.

The specialty has been available for hospital board certification in Oregon for just four years, Christensen said.

“I think you’re going to see more doctors get involved in palliative care as it becomes more popular across the country,” Christensen said.

In the meantime, Johnson was released from Providence last week and is at home. She is receiving hospice care to alleviate her pain and suffering.

“She has her family around her and is getting good care,” Christensen said. “And she is not facing any more needles.”

Many of us think of death as the worst possible outcome for a terminally ill patient, but Judith Schwarz disagrees.

Schwarz, a patient supporter at the nonprofit Compassion & Choices, says prolonging death can be a far worse fate. For many patients, good palliative or hospice care can alleviate suffering, yet “a small but significant proportion of dying patients suffer intolerably,” Schwarz says.

Based in the New York area, Compassion & Choices is an organization that helps terminally ill patients and their families make informed and thoughtful end-of-life decisions to hasten a patient’s death. These decisions are not made impulsively, Schwarz tells Fresh Air‘s Terry Gross. “Nobody makes this choice unless the burdens of living have so consistently, day after day, outweighed all benefit.”

Schwarz notes that her organization does not help patients kill themselves, and their work should not be confused with assisted suicide. “They are dying,” she says. “They are on a dying trajectory. The only choice they have is the circumstances of their death and what kind of disability they will be suffering as they approach that time.”

Compassion & Choices supports the right to die but does not work outside the limits of the law, which varies from state to state. There are now three states — Washington, Oregon and Montana — where, in certain instances, it is legal for doctors to prescribe medication to hasten death.

As patients and their families make these excruciating decisions, they consult with doctors who evaluate their end-of-life options. Making decisions to hasten death “requires a tremendous act of love on the part of the family,” Schwarz says. “Because actually, what this patient is doing is leaving them, and leaving them perhaps sooner than their disease would require.”

Interview Highlights

On our conflicted feelings about hastening our own deaths

“People who think they want to be able to, for example, take a lethal amount of medication to end their life — they speculate that that’s how they are going to feel, but they actually don’t know how they are going to feel when they get to the point where their quality of life is so diminished that they really wish they were dead, that they would not wake up the next morning. But to take that step, to take that final step to cause your own death in one very … dramatic act is very, very hard, and most people don’t do that.”

On existential distress and medical prescriptions to hasten dying

“The Oregon Death with Dignity Act has been around for 14 years now, and the … primary reasons for patients asking their physician for this prescription have remained consistent over all of those years. It’s not about pain; pain can actually be managed … that’s not why people want to hasten their dying. They do [it] because they’re not able to do any of the things that they’ve always enjoyed doing — that give them any kind of pleasure. They can’t do those things anymore. And they have a complete loss of autonomy, they’re dependent upon other people to care for them, and they feel that they’ve lost all dignity. You have to understand, Terry, this doesn’t matter for everybody, but for those people that it does matter to, it matters profoundly. This is really what we really think of … as sort of existential distress — the meaningless of having to just wait for this death to occur.”

On the American Medical Association’s definition of physician-assisted dying as incompatible with the role of the physician as healer

“I suppose that’s a comforting position to take, but it doesn’t really speak to the nature of suffering, and it doesn’t speak to a patient’s wish to be treated with dignity and to be heard. We talk about ethical principles of beneficence and non-maleficence, that death is deemed the worst possible outcome that should be prevented at all costs. Well, I beg to differ. There are many people for whom death is not the worst thing that could happen to them. In fact, prolonging their dying is the worst thing that could happen to them, and the notion of healing in that environment strikes me as a bit of a one-sided understanding of the relationship.”

Listen to the entire program here.

California State University is tackling a shortage in palliative care workers by launching the first statewide educational and workforce development initiative dedicated specifically to palliative care. With an aging population and an increase in the number of people living with serious illness, health care systems are facing the challenge of providing the care our population needs, and the CSU Institute for Palliative Care will help overcome that challenge.

“Our aging society requires a qualified palliative care workforce that can support people’s desire for quality of life, independence, and choice and control in their health care decisions,” said Joseph Prevratil, CEO and President of Archstone Foundation, which provided initial grant funding for the Institute, along with California HealthCare Foundation.

The CSU Institute for Palliative Care at CSU-San Marcos will offer palliative care training for professionals, and it will educate the public about the value of palliative care and how to access it. This public awareness will be invaluable to those who would benefit from palliative care but know so little about it.

“More people than ever before are living with one or more chronic conditions, and while palliative care can do so much to help, its role and benefits are not well understood,” said CSU Institute for Palliative Care Executive Director, Helen McNeal. “The CSU Institute for Palliative Care will educate people and make them aware of their options and the resources available to them through our community partners.”

In a health care system still preoccupied with finding a cure, palliative care focuses on improving the quality of life for those facing serious illness or death. The care acknowledges everyone’s right to quality at the end of life, and offers comfort and care when it’s most needed. Physicians, nurses, social workers, pharmacists, chaplain, and others work together to provide help for patients and families facing this difficult and confusing time of life.

Launched by the largest higher-education system in the U.S., the CSU Institute for Palliative Care at CSUSM will create a model for other CSU campuses, as well as other campuses across the country. It will offer continuing education courses for working professionals, academic curriculum for today’s students and programs to support palliative care awareness in the community.

“Palliative care reduces suffering and has been shown to significantly improve quality of life, patient satisfaction and health outcomes for people facing serious illnesses,” said CSUSM President, Karen Haynes. “We are very pleased to be giving this important Institute its start here at Cal State San Marcos and to begin addressing this critical workforce need in not only our region but the state and nation as well.”

A new study says almost one third of Medicare’s beneficiaries use the program to pay for end-of-life care at nursing homes, which may not be equipped to treat or prevent pain and suffering.

Those palliative care services are usually associated with hospice care, while nursing homes are typically for rehabilitation and long-term care.

The study’s researchers, who published their findings in the Archives of Internal Medicine on Monday, say the findings suggest that palliative or hospice care should be incorporated into Medicare’s nursing home benefits.

“Often our focus on these patients is trying to keep them functional or independent for as long as we can. What we may be overlooking is that they are on an end-of-life trajectory,” said Dr. Katherine Aragon, the study’s lead author from Lawrence General Hospital in Massachusetts.

Medicare, the federal health insurance program for the elderly and disabled, pays for 100 days of skilled nursing facility care after a person is hospitalized for at least three days.

Under those benefits, the program pays 100 percent of the bill for the first 20 days of care, and all but a $144.50 per day copayment after that.

That may be less expensive for patients and their families than using Medicare’s hospice benefits, which does not pay for room and board. Patients need to pay for that out of pocket, through additional insurance or Medicaid – for which many may not qualify.

For the study, Aragon and her colleagues at the University of California, San Francisco, gathered information from a database to see how many people – recently released from a hospital – used Medicare’s nursing home benefits during the last six months of their lives.

After looking at information on more than 5,100 people between 1994 and 2007, the researchers found that about 31 percent had used the nursing home benefits in those last six months, and about nine percent died while still using those benefits.

The study, however, cannot say what type of care those patients received before their deaths. It also doesn’t say how much those stays cost the Medicare program.

Aragon told Reuters Health that some nursing homes are offering palliative and hospice care, but she does not see the current situation changing without the homes being reimbursed for the care.

Dr. Peter Boling, from Virginia Commonwealth University in Richmond, told Reuters Health that it would most likely require legislative or regulatory action.

“It ends up being all about the money in the end, which is always the case,” said Boling, who wrote a commentary accompanying the new study.