Image: Mulcahy speaking to a group of physicians at Northwestern Memorial Hospital
“The Illinois POLST form is a step in the right direction,” said Mary F. Mulcahy, a co-founder of Life Matters Media and practicing oncologist at Northwestern University, while lecturing physicians about the form Thursday at Northwestern Memorial Hospital.
In March, the Illinois POLST form was released to the public, an effort headed by the POLST Paradigm and theChicago End-of-Life Care Coalition. This update to the Illinois DNR advance directive aims to improve the quality of life for patients at end of life.
POLSTs, Physicians Orders for Life Sustaining Treatment, are more detailed than conventional living wills and advance directives. These forms give patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across state care settings and direct doctors to provide or withhold lifesaving treatments.
Image: POLST form
The form should be adjusted over time to fit each patient’s prognosis. “This is not a one-time thing, as patients progress the form can change,” Mulcahy said. “There should be shared decision-making between physicians and patients.” To be valid, the form must be signed by the attending physician.
In the U.S., the average patient visits the hospital more than 30 times and meets nine different physicians during the last six months of life. These patients could benefit from having their medical wishes written down and on hand; the convenience helps cut through the chaos and confusion prevalent in care settings.
POLST was developed in Oregon in the 1990s, and now 14 states have POLST programs. Twenty-eight states are considering the use of such forms.
“Hopefully this form will change the culture and get people talking and preparing for the end of life,” Mulcahy said.
Palliative care expert Andrew Thurston, M.D., agreed. “I think this is great. My hope for the POLST form is that it will clarify patients’ wishes for their end of life care, and that it helps doctors more effectively communicate with their patients,” said Thurston. “We need more open discussion, and with easier language, this form helps.”
Advances in medical therapies and technological innovation have led to a “death denying” culture pervading American health care, said Dr. Susie White, an emergency medicine physician at Provena St. Joseph Hospital, during a bioethics symposium at the University of Illinois-Chicago on National Health Care Decisions Day.
National Health Care Decisions Dayaims to inspire and educate the public and medical providers about the importance of advance care planning.
White speaking to a room of medical providers, caregivers at symposium on NHCD Day
“Many older patients find themselves in a position they never thought they would find themselves in,” White said. “We have gained 30 years in our life expectancy.” Prior to antibiotics and modern therapies, most people died quickly- from infections, malnutrition or fevers.
Now, only 10 percent of Americans die sudden, unexpected deaths, and the sick and dying receive care in hospitals.
These shifts have fueled a “death denying” culture, one in which many wish to suppress or avoid any sign of aging or illness, White said. Families may grow angry at doctors- or even the patient- when treatments fail.
White maintains that palliative care can help patients and their families, and that the relatively recent medical specialty has the potential to reverse this culture of denial. “What we want to do is form a team of doctors, nurses, chaplains, anyone who might be helpful in an individual’s case and help anyone who has a life- limiting disease,” she said. “We want everyone in the family on the same page and smooth transitions.”
Most patients should not begin palliative care during the process of active dying, but rather, much earlier- even at the onset of illness, White said. “Palliative care is not hospice, but is an extra layer of support, that can go along with aggressive treatments,” she said.
The Integritas Institute for Ethics, a program of the John Paul II Newman Center, arranged the symposium, which explored the ethical challenges that arise at the end of life.
Launched in 2011 by the nonprofit Aging with Dignity, Five Wishes Online has become one of America’s most popular living wills.
For a $5.00 fee, the Web site lets adults choose who they want to make medical decisions on their behalf if unable to do so, preferences for medical treatments, comfort care and social interaction.
Written with help from the American Bar Association’s Commission on Law and Aging, theform meets legal requirements in 42 states and can be used in all 50. It can be printed immediately or emailed to physicians.
With help from the United Health Foundation, the form is available in 26 languages, including Spanish, Hebrew and traditional Chinese. The less computer savvy can print out the form and fill it in by hand. There are even video tutorials and easy to navigate prompts.
First introduced in physical form in 1997, more than 18 million copies are now in circulation. It boasts easy to read language and simple explanations for those unfamiliar with medical and legal terminology.
“Aging with Dignity believes we have responsibility in our society, local communities and families to care for the most vulnerable among us – those who are sick, aged, weak, disabled, poor and isolated,” an online statement reads.
Massachusetts’ lawyers, doctors, hospices and faith communities have been providing the form because it has proven successful, the North Andover Patch reports.
Five Wishes Online is just one of a growing group of Web sites offering advice and resources for those making end of life decisions. LMMpreviously reported on the popularity of Prepare and The Conversation Project.
Life Matters Media’s Daniel Gaitan shared his thoughts on the Oscar-nominated “Amour” and the importance of advance care planning in The DePaulia.
Amour
‘Amour’: Discussing death and dying
How do you care for a suffering loved one? “Amour,” the sublime French-language nominee for best picture directed by Michael Haneke, encourages discussion surrounding the end-of-life by highlighting the pain one aged couple faces navigating caregiving, medical treatments and death.
Amour’s first scene takes place in an elegant Parisian apartment. Firefighters bash in the doors and cover their noses from the smell of human decay. They proceed to the bedroom, only to find a woman’s corpse wreathed in carefully arranged flowers. The rest of the film is flashback.
The apartment belongs to Georges and Anne, a posh couple in their eighties who care deeply for each other. They have been married for decades and are finally enjoying the rewards of having lived successful music careers. However one morning, Anne (Emmanuelle Riva) goes into a catatonic state during breakfast. This state triggers a flurry of health problems, including paralysis. Georges (Jean-Louis Trintignant) dutifully does the best he can to care for her. He promised he would not put her in a nursing home or let her die in a hospital. The film suggests they do not have advance care directives, a living will or power of attorney. If they did, the film would have ended much differently.
Planning for the end of life
Advance care planning involves learning about the types of decisions that need to be made in case of a medical crisis and aims to ensure an individual’s desires are carried out.
One common form of planning is a living will, a written document that tells doctors how a patient wants to be treated if incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.
Little is known about the advance care plans of Colombian, Mexican and Puerto Rican women living the in the U.S., according to a new study commissioned by the University of South Florida. Researchers sought to identify decision-making patterns among Latinas and found language proficiency and health care access make it harder for them to plan for their end of life care.
Advance care planning involves learning about the types of decisions that might need to be made in case of a medical crisis or the end of life and aims to ensure an individual’s desires are carried out. Advance care planning is especially important for Latinas who experience social inequalities, discrimination and language barriers, the researchers note.
Researchers recorded Spanish language interviews with 45 Latinas in Central Florida who had been diagnosed with cancer. The majority of women, 35 in all, identified obstacles to information about planning, including insurance and financial factors. Only 10 women had completed at least one form associated with advance care planning. Only three of those 10 women had completed a living will, designated a health care surrogate and an enduring power of attorney.
Of the ten women who had taken steps to plan, four were Colombian, five were Puerto Rican and one was Mexican. Among the Colombians, three had only a living will and one had a living will, a designated surrogate and an enduring power of attorney. Two Puerto Rican women had a living will, a designated surrogate and an enduring power of attorney, two had just a living will, and one had both a living will and power of attorney.
Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis
Another 13 women stated they knew of advance care planning but had not completed any forms. According to researchers, “none [of the 13] were able to satisfactorily articulate the definition of ACP,” hinting at miscommunication within care settings.
A living will is a written document that tells doctors how a patient wants to be treated if permanently unconscious or incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.
Some Mexican women acknowledged the nature of their cancer diagnoses and informally discussed their wishes with family members, an unrefined form of planning. They trusted that their desires would be fulfilled, indicating a preference for family discussions instead of clinical ones.
The study, also supported by the Division of Population Sciences and the H. Lee Moffitt Cancer Center and Research Institute, aims to remedy the lack of information available on Latinas.
“The rapid growth among these three groups in the USA highlights the urgency of addressing ACP and decision making, given the increased risk of cancer among Colombians, Mexicans, and Puerto Ricans residing in the USA,” the researchers wrote. Cancer is the second leading cause of death among Latinos in the U.S., accounting for some 20 percent of deaths.
Researchers conclude that knowledge gap exists between the Latinas they studied. This gap stems perhaps as a result of immigration/migration history and lower levels of education, English language proficiency and income. Latinas who have been in the U.S. for a longer period of time knew more about advance care planning. More Spanish language forms and simpler language, they say, may help more Latinas create advance care plans.
The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve end of life care in Illinois, is on its way to implementation. Health care professionals met at Rush University Medical Center this week to discuss the form’s development and strategies for raising public awareness.
Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center, provided the audience with hypothetical scenarios the POLST program form could remedy.
POLST program forms are more detailed than conventional living wills or other advance directives. They allow people to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for people who are likely in their last year of life. They can follow patients across in-state care settings and direct doctors to provide or withhold life-sustaining treatment in emergency situations.
The forms aim to more quickly direct doctors to a person’s wishes and eliminate confusion about what patients would want in the case that they are medically incapacitated and unable to communicate their wishes. The forms provide instructions in the case of a cardiopulmonary arrest (the person has no pulse and is not breathing), the degree of medical intervention they would want in a pre-arrest situation (the person has a pulse and/or is breathing), and whether or not they would want artificial nutrition if their medical illness prevented them from taking in adequate oral nutrition.
How a POLST form could help
A 67-year-old man is sent to the emergency room with chest pain and shortness of breath. He is also confused. The cardiologist says that a cardiac catheterization with angiogram and a stent are needed. The nurse tells the physician that there is a DNR order on his chart. Should the physician send the patient for an angiogram? It’s not clear.
If that patient had a POLST form that indicates DNR in case of full cardiac arrest but an order for full treatment in a pre-arrest emergency, the physician would immediately know what to do. The patient would be sent for the angiogram.
An 85-year-old man is admitted to the emergency room with severe pneumonia. He’s hypoxic, confused and refusing the ventilator. There is a DNR order on the charts. The physician feels that DNR doesn’t apply to this potentially reversible condition but the nurses disagree. He receives full resuscitation.
If that same patient had a POLST form indicating no CPR in the case of arrest and a preference for comfort care, the physician and nurses would have clear instructions. He would not have undergone full resuscitation, but would have been maintained in comfort with noninvasive maneuvers. .
A 59-year-old woman who is being treated for breast cancer is admitted to the emergency room for sepsis. She is transferred to intensive care and receives oxygen and maximum vasopressors. She has a DNR order on the charts. The staff are concerned that they are violating her wishes.
If she had a POLST form indicating no CPR in the case of arrest but limited interventions in addition to comfort measures, the staff may feel more comfortable treating her as they are doing and spend less time deliberating.
The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve the quality of end of life care, is on its way to Illinois. Health care professionals met at Rush University Medical Center Thursday to discuss the form’s development and strategies for raising public awareness.
Sample POLST
The Chicago End-of-Life Care Coalition sponsored the discussion led by Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center.
POLST program forms are more detailed than conventional living wills or other advance directives. They allow patients to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across in-state care settings and direct doctors to provide or withhold life saving treatment in emergency situations.
For instance, an individual may choose to decline resuscitation efforts, but of for artificial nutrition. An individual may choose artificial nutrition with set limits or permanent placement.
Goldstein answering audience questions
“POLST improves on the existing uniform DNR form,” said Goldstein. “POLSTs are medical orders and have to be followed by all medical care providers.” To be valid, a POLST form must be signed by an attending physician.
Loretta Downs, president of the CECC, told LMM that POLST is essentially about enhancing personal liberty at end of life. “For Illinois, accepting the POLST form is a statement encouraging people to take advantage of their liberty regarding end of life decisions. It empowers the individual to make a clear statement about whether or not he or she wants end of life care and what level of treatments.”
The POLST form will be available in early 2013, a version of the IDPH DNR Uniform Advance Directive. Goldstein said it will be most similar to the California POLST. The final form awaits approval from state health officials and it may be “ultra pink.”
Many in attendance left hopeful that the form would help their patients. Kriston Kurelic, a social worker at Passages Hospice, says she is excited about the form’s implementation. “I’m very interested in the changes that will happen,” Kurelic said. “It will be very beneficial to long-term care. It will be beneficial to patients and families.”
Christine Nelson, director of nursing at Manor Care, agrees. “I think anything that helps us assess what people’s wishes are more clearly is helpful,” she said. “The only barrier I see is time being taken to explain the form to patients.”
The task of educating patients will likely fall on individual health care providers. Because it is a physician order, it is intended to be accompanied by a meaningful doctor-patient dialogue. Carol Blendowski, a Rainbow Hospice nurse practitioner, says time is what is required to have such conversations, but thinks patients will ultimately find the POLST easy to navigate. “I can see clearly now,” she said. “This form is user friendly.”
POLST was developed in Oregon in the 1990s, and now 15 states have POLST programs. Twenty-eight states are considering the use of POLST forms.
Many families caring for seniors with advanced neurological disease face this dilemma: prolong their loved one’s life by artificial means via a feeding tube or stop feeding them altogether. Lisa Krieger’snew feature for Mercury News focuses on the billion-dollar feeding tube business and why some families regret their decision to opt for artificial nutrition.
One-third of nursing home residents suffering from dementia receive tube feedings, contributing to the $1.64 billion industry. However, some families and physicians insist the value of feeding tubes is overrated, since they provide little medical benefit and increase pain for those suffering from progressive neurological disease.
Source: mercurynews.com
“The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states,” Krieger reports. The only comprehensive study on the matter found the average rate of use nationwide was 54 per 1,000 people.
Racial minorities are also more likely to opt for artificial tubes than whites. Life Matters Mediapreviously reported that blacks are twice as likely than others to choose aggressive end of life treatments.
As medical costs continue to rise and the baby boomer population ages, views on artificial nutrition may be changing. “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying,” Krieger writes.
For example, a 1999 study by Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolong the lives of demented nursing home patients. They also didn’t prevent pneumonia or improve comfort.
Finucane’s analysis asserts: “We found no data to suggest that tube feeding improves any of these clinically important outcomes and some data to suggest that it does not… risks are substantial. The widespread practice of tube feeding should be carefully reconsidered…”
Most families, however, are accustomed to caring for their sick by feeding them, a reason why the decision to opt for or against artificial nutrition is especially emotional. “Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion,” Krieger writes.
Sometimes a terminally ill individual may not feel pain when a feeding tube is first inserted in the stomach. As the illness progresses and pain begins to get more intense, removing the tube becomes a moral debate. This quandary often comes as another surprise for families.
“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of Windsor Gardens Rehabilitation Center in California. “But we sure aren’t doing them any great favors.”
Despite some change in public opinion, families may not have the choice to reject feeding tubes. The fallout from the controversial 2005 Terri Schiavo case led the Catholic Church to order doctors at its hospitals to ignore patients’ advanced directives- even if they do not want artificial feeding. Catholic hospitals may mandate artificial nourishment.
In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.
“People with end stage dementia still possess human dignity. And that dignity must be respected,” said Vice- President of Corporate Ethics at Catholic Daughters of Charity Health System Gerald Coleman. Krieger insists that tube feeding constitutes ordinary care at Catholic hospitals.
A form directing physicians to withhold or continue lifesaving treatment for terminally ill patients is missing from statewide pilot program Honoring Choices Wisconsin, designed to educate more people about end of life care. The controversial Physician Orders for Life-Sustaining Treatment (POLST) is excluded because critics, including Catholic bishops, say the form lays a foundation for euthanasia and abuse, while proponents consider the POLST an advocate for terminal patients’ rights.
“POLST is a physician order that does not need the patient’s own writing,” explains Katharine Karage, Advance Directives Coordinator at Mayo Health System in La Crosse, Wisconsin. “POLST is four questions where the physician identifies with their patient what areas of care you want depending on what your illness is.”
POLSTs are more detailed than conventional living wills or advance directives. They allow patients to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across care settings and direct doctors to provide or withhold lifesaving treatment.
Tim Bartholow, chief medical officer of the Wisconsin Medical Society, chose not to include POLST as part of the statewide pilot. “POLST is the lightning rod at the moment,” he told the Journal Sentinel. ”I think we’ll get there, but it could be three or four years before there’s consensus about this.”
POLST aims to ensure patient wishes are executed in hospitals and unexpected medical situations. POLSTs were first developed in Oregon during the 1990s.
A sample POLST obtained by the Journal states: “Any section not completed indicates full treatment for that section. When need occurs, first follow these orders. Then contact physician.”
“Families were saying, ‘Why can’t we talk to each other?’ and ‘If we write orders in one place, why are they ignored in another?” says Margaret Murphy Carley, executive director of the National POLST Paradigm Task Force at the Oregon Health and Science University. ”So you have an advanced directive. Where is it? In a drawer? In a safety deposit box? That’s the problem.”
Stephen Pavela, an internist with the Mayo Clinic Health System-Franciscan Healthcare in La Crosse, opposes statewide implementation, though Mayo has used POLSTs since 1997. ”POLSTs lock into place orders that in the moment might not be appropriate and might be dangerous,” he told the Journal.
Wisconsin’s Roman Catholic Bishops issued a warning against the use of POLST. “A POLST form presents options for treatments as if they were morally neutral,” the bishops wrote in a letter published by the Wisconsin Catholic Conference. “In fact they are not.”
The letter continues: “A POLST oversimplifies these decisions and bears the real risk that an indication may be made on it to withhold a treatment that, in particular circumstances, might be an act of euthanasia.”
Bud Hammes, who leads the Respecting Choices program at Gundersen Lutheran Hospital, says that opponents aren’t understanding the many issues that arise in end of life care. “I work shoulder to shoulder with doctors and nurses who care every day for dying patients. They see the pain. They see the suffering when there is not good planning.” The Respecting Choices program will train participating health systems and organizations to properly use POLST.
“What makes this program tick is the redesigning of health systems so that it becomes part of routine care. We need to make sure it’s not an afterthought, and not something the patient does on their own,” Hammes says.
The Journal reports that fifteen states have endorsed POLSTs with legislation or administrative rules protecting providers who sign and follow them from legal liability. Some 20 others are developing POLST programs.
Catholic hospitals may sidestep advanced care directives for unconscious patients and mandate artificial nourishment, even if a patient has expressed reluctance to prolong life. In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.
The controversial Terri Schiavo case influenced the Catholic Church’s stance on artificial nourishment and end of life care, eventually directing policies in Catholic hospitals.
The Terri Schiavo effect
After a seven-year, high profile legal battle, 41-year-old Terri Schiavo’s feeding tube was removed in 2005. Doctors determined she had been in a persistent vegetative state for fifteen years, after cardiac arrest led to debilitating brain damage. Her husband, Michael Schiavo, petitioned for her feeding tube to be removed. However, her parents contested she was conscious and should be allowed time to recover. Michael Schiavo asserted he was honoring his wife’s wishes not to be kept alive artificially.
The case eventually made it to the Florida Supreme Court. “Terri’s Law,” which had given Florida Governor Jeb Bush the authority to intervene and reinsert the tube, was found to be unconstitutional.
The tendentious decision to pull the feeding tube from Schiavo would inspire the Church to reevaluate its doctrine and policies regarding end of life care.
Two years after Terri Schiavo died, The New York Times’ Patrick J. Lyonswrote about the fallout from the case. “The ethical and moral dilemmas surrounding the end of life can be some of the most difficult,” Lyons writes. “Ms. Schiavo’s long coma and the struggle over who should decide what to do about it attracted huge attention and sent off political and social shock waves that still reverberate.”
Even the Vatican was urged to issue a statement affirming a position on end of life and artificial nutrients in 2007. Lyons writes, “The Vatican had to deliberate for two years over how to answer a request for guidance on cases like Ms. Schiavo’s that was posed by American bishops after she died in 2005.”
Advanced directives may not matter
The Congregation for the Doctrine of the Faith, which oversees Catholic doctrine and investigates crimes against the Church, determined that a patient in a “permanent vegetative state” must receive the administration of water and food, even if through artificial means.
As a result of the Congregation’s order, Catholic hospitals may now invalidate advanced directives declining artificial nutrition. Even so, Catholic hospitals still continue to receive billions in federal Medicare and Medicaid reimbursements.
Sally Quinn, religion writer for The Washington Post, describes how her ailing 89-year-old mother does not wish to be kept alive through artificial means if she has little hope of recovery. “She drew up a living will decades ago, and it specifies that no extraordinary measures, including artificial hydration and nutrition, be taken to prolong her life if there is no reasonable hope of recovery.”
“I would not dream of countermanding my mother’s decisions about end-of-life care, but, if she were unlucky enough to be taken to a Roman Catholic hospital in an emergency, the church of her girlhood would,” Quinn writes. “The relatives of unconscious patients who have specified their opposition to artificial nutrition will have a fight on their hands-and may have to transfer their loved ones to another hospital-to carry out the patient’s wishes.”
According to the Conference, “The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-saving procedures, should always be respected and normally complied with unless it is contrary to Catholic moral teaching.”
Catholic hospitals number close to 600 in the U.S, and they provide about 12 percent of the nation’s health care. Quinn asserts that Catholic hospitals once adhered to patient wishes at the end of life. “That changed with the Terri Schiavo case, in which Pope John Paul took the side of those who insisted that forced nutrition and hydration was a ‘natural’ means of preserving life and must always be used.”
Barbara Coombs Lee is the president of Compassion and Choices, a non-profit dedicated to enhancing end of life choices. She writes in an article for The Huffington Post: “A little known but far reaching aspect of the Church’s organizational structure requires every hospital, nursing home, assisted living center, etc., with a Catholic charter to abide by a set of rules called ‘Ethical and Religious Directives for Catholic Health Care Services.’ “
These 72 directives, Coombs Lee explains, itemize how the services patients receive conform to Catholic doctrine.
According to directive 58: “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care.”
According to Sister Carol Keehan, executive director of the Catholic Health Association, “Advance directives are held in great respect in Catholic hospitals. Some might like to say there’s a terrible problem, but there isn’t.”
