Putting Dying Wishes In Medical Record Helps Them Happen

Putting Dying Wishes In Medical Record Helps Them Happen

Posted on Monday, June 9th, 2014 at 1:55 pm by lifemediamatters

This piece was first published in Reuters Health. LMM President Randi Belisomo is a contributor.

When patients’ end-of-life preferences are entered as instructions in their medical record, their wishes are more likely to be honored, a new study suggests.

The study was done in Oregon, one of two states with an end-of-life planning program called POLST (Physician Orders for Life-Sustaining Treatment).

“POLST is not for everyone. Only patients with serious illness or frailty should have a POLST form,” the program’s website notes.

polst-largeBut for those patients, “POLST records and honors wishes in a way that (medical professionals understand) and can implement across settings of care,” said Dr. Susan Tolle, an internist at Oregon Health and Science University in Portland and the study’s senior author.

Bright pink POLST forms are medical orders signed by physicians, nurse practitioners or physician assistants after discussions with patients about preferred treatment plans.

Tolle’s team studied death records of 58,000 people who died of natural causes in 2010 and 2011. About 30 percent had copies of their POLST form in a state-wide registry. The researchers compared the location of death on death records to POLST patient preferences.

“Although it is probably more important how you die than where you die, where you die can strongly affect how you die,” they write in the Journal of the American Geriatrics Society.

POLST forms don’t let patients specify where they prefer to die. Instead, the forms include three order sets that could impact location. More than two thirds of patients with POLST forms had chosen the first option: “prefers no transfer to hospital for life-sustaining treatments . . . transfer if comfort needs cannot be met in current location.”

Slightly more than a quarter chose the second option: “transfer to hospital if indicated . . . generally avoid the intensive care unit.”

Only six percent chose full treatment: “transfer to hospital and/or intensive care unit if indicated.”

One limitation of the study is that for people who died without a POLST form in the registry, there was no way to know what their preferences would have been. Also, the results would have been more reliable if everyone had been randomly assigned to a POLST or no-POLST group.

Still, the researchers believe, their findings suggest POLST forms made it more likely that patients’ wishes would be carried out.

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Belgium: Euthanasia For Children Nears Approval

Posted on Saturday, February 15th, 2014 at 6:37 am by lifemediamatters

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

The Belgian Parliament has adopted a controversial bill extending the right to euthanasia to terminally ill children, the Parliament announced Thursday via Twitter.

The bill easily passed the Belgian House of Representatives 86 to 44, following a vote by the country’s Senate in December in support of the measure. The bill is expected to be signed by King Philippe, making Belgium the first country in the world to remove age limits to the practice.

“Our responsibility is to allow everybody to live, but also to die, in dignity,” said Karine Lalieux, a Socialist member of the House of Representatives, according to The Associated Press.

Under amendments to the country’s 2002 euthanasia law, a child of any age may be helped to die under strict conditions: the child must be terminally ill, close to death and suffering a great amount of pain. Counseling by doctors and a psychiatrist or psychologist is required, as is approval by parents or guardians. The child must possess the “capacity of discernment and be conscious” of requesting death.

Socialist Senator Philippe Mahoux, sponsor of the country’s 2002 “right to die” legislation, called for the law’s expansion because he said doctors have been illegally helping sick children die. Mahoux, a trained surgeon, called euthanasia “the ultimate gesture of humanity,” according to Agence France-Presse. “The scandal is illness and the death of children from disease.”

Opponents, including religious leaders and some medical professionals, argue that children are not capable of making such difficult decisions. “The law says adolescents cannot make important decisions on economic or emotional issues, but suddenly they’ve become able to decide that someone should make them die,” Brussels Archbishop Andre-Joseph Leonard said at a prayer vigil last week, according to the BBC.

On Wednesday, 160 pediatricians petitioned lawmakers to postpone the vote arguing the bill is unnecessary. “Pain can be eased nowadays; there’s been huge progress in palliative care,” Nadine Francotte, a cancer specialist in the city of Liege, told AFP.

In 2012, euthanasia accounted for 2 percent of all deaths in Belgium, up 25 percent to nearly 1,400 cases. A terminally ill person may drink a barbiturate-laden syrup, or a doctor can administer the drug through an intravenous tube to induce death.

Belgium is one of a handful of European countries where euthanasia is legal. The Netherlands legalized euthanasia in 2002, even allowing it in some cases for seriously ill minors 12 and older. Luxembourg allows euthanasia for adults; Switzerland allows doctors to help patients die in some circumstances.

Euthanasia is banned in the U.S., but physician-assisted suicide, or “Death with Dignity,” is legal in four states: Oregon, Washington, Vermont and Montana.


A Doctor’s View Of Death With Dignity

Posted on Thursday, December 12th, 2013 at 8:51 am by lifemediamatters

Hundreds of concerned citizens and patient advocates gathered at Temple Sholom in Chicago to learn about “Death with Dignity,” legislation that could allow physicians in Illinois the ability to prescribe life-ending medications to some terminally ill patients. Currently, only three states have “Death with Dignity” legislation– Oregon, Washington and Vermont; physicians in Montana may raise a defense of consent if charged with assisting in a suicide because of a 2009 trial court ruling.

Both the Oregon Death with Dignity Act (1994) and the Washington statute (2008) set safeguards to protect patients against coercion from physicians or family members. Each patient must be of sound mind when requesting the prescription for life-ending barbiturates; each patient must be informed of all other options including palliative medicine and hospice care; two doctors must confirm a diagnosis of terminal illness with no more than six months of life-expectancy; and any patient may change his or her mind at any time.

Doctors Jorge Del Castillo, NorthShore University Hospitals, Dan Fintel, Northwestern Memorial Hospital, and Daniel G. Samo, Northwestern University’s Feinberg School of Medicine, offered their perspectives about the controversial legislation.

“I think we really need to move forward and get our legislature involved in making some progress in this state, making some inroads,” Castillo said, telling a story of his 96-year-old aunt. “She was clear minded, sharp as a tack, but heart failure– she wasn’t getting around anymore, she just wasn’t enjoying life,” he said. When Castillo visited her in Miami last year, she asked him to kill her. “I said, ‘I can’t really do that. You’re still around, we’re still enjoying each other.’ But she died a week later, I think she willed herself to die. It was a heartbreaking situation to me, because I had the wherewithal to help her, but I could not.”

Samo urged the crowd to separate “Death with Dignity” laws from physician-assisted suicide. “The physician writes the prescription but does not administer the drug,” he said. “This is about a competent person who decides this is time and wants to go.”

Death W/ DignityAccording to Fintel, very few deaths in Oregon and Washington are a result of prescribed barbiturates– only about .1 to .2 percent (1 to 2 out of 1000) of recorded deaths. “This has not been an abused treatment,” he said. “This is not a wholesale reason for people to end their lives early because their medical bills were horrible, or because their families wanted to do them in.”

Samo stressed that the legislation bolsters patient autonomy. “Your religion or your beliefs say you shouldn’t do it? Great, you don’t have to,” he argued. Samo said he believes “Death with Dignity” does not reduce the sanctity of life and does not unfairly targets minority groups. He referred to Oregon as “a great social experiment.”

Other states have attempted to pass similar “Death with Dignity” laws, but they have had mixed results. In May 2013, Vermont passed the Patient Choice and Control at End of Life Act, a law based on the Oregon model. But in 2012, proponents of similar legislation in Massachusetts faced strong opposition from the Catholic Church and social conservatives, and residents narrowly voted against that measure. According to Compassion & Choices, a more than 100-year-old provision in Hawaii law does not prohibit doctors from providing aid in dying to their terminally ill patients. It is unclear when or if Illinois will approve similar right-to-die legislation.

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Loretta Downs, past president of the Chicago End-of-Life Care Coalition, said she appreciated the doctors’ enthusiasm, but she felt their knowledge about palliative medicine and hospice care was limited. “Listening to three highly prominent physicians speaking publicly in favor of physician-aid-in-dying was exhilarating,” she said. “While they supported the use of advance care planning and palliative care and hospice at the end of life, each of them made comments that showed a disappointing misunderstanding of the care those services provide,” Downs added. The panel did not discuss the new Illinois POLST form, which Downs called “the most empowering legal medical directive a person facing death has today.”

Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told Life Matters Media that Illinois may be 10 years away from passing some form of “Death with Dignity” legislation. “We just had our first law passed legislatively, ever, in Vermont– it took 10 years to get that project complete. It started as a local group, much like the local group that sponsored the event in Illinois,” she said.

One of the biggest impediments for the organization’s movement in Illinois is the lack of exposure to “Death with Dignity” legislation, Sandeen added. “Oregon is way out in the West, and our experience hasn’t trickled across the U.S., yet,” she said. “It’s not like there has been a lot of discussion about ‘Death with Dignity’ in Illinois before this.”


Vermont Votes To Allow Death With Dignity

Posted on Tuesday, May 14th, 2013 at 5:10 pm by Life Matters Media

The Vermont House approved a measure allowing physicians the ability to prescribe life-ending medications to some terminally ill patients seeking to end their lives. Vermont is set to become the fourth state allowing the legislation known as “Death with Dignity,” following Oregon, Washington and Montana.

Photo by Jeb Wallace-Brodeur

The Patient Choice and Control at End of Life Act awaits approval from Gov. Peter Shumlin, a Democrat and supporter of the bill.

“By a 75-65 roll call vote, the House approved a bill largely that copies a law passed by Oregon voters in 1997 for three years and then shifts to a system with less government monitoring,” The Associated Press reports.

This marks the first time this type of legislation has been moved to passage by a legislature. With safeguards similar to the Oregon bill, patients seeking the prescription barbiturates must first state their intentions three times- once in writing. A second opinion from a physician indicating a patient has less than six months to live and proof of sanity, are mandatory. Patients must wait 48 hours before filling the prescriptions.

“It’s an important step for terminally ill Vermont patients,” Dick Walters, president of Patient Choices-Vermont, said after the vote. “It’s a big step forward for the region and for the country as a whole,” the AP reports.

Come 2016, changes advocated by some of the state senators seeking less government involvement during the process will go into effect, including less monitoring from physicians.

“It’s huge,” said lobbyist Michael Sirotkin, who for years has been involved with the issue in Vermont. “I think it’s going to have a major effect on other states’ willingness to vote on this,” he told USA Today.

But not all lawmakers approved of the bill’s passage. “There can never be a dignified death using a handful of pills or a lethal cocktail,” said Rep. Carolyn Branagan, a Republican from Georgia, VT.

Other opponents were concerned about the radical changes the bill underwent while in the Senate. “We are passing a bill that has not been vetted,” said Rep. Paul Poirier, an Independent from Barre. “Do we want to pass a bill … just accepting 100 percent what the Senate did overnight?”


POLST Form Presented At Northwestern Memorial

Posted on Thursday, May 2nd, 2013 at 3:12 pm by Life Matters Media

Image: Mulcahy speaking to a group of physicians at Northwestern Memorial Hospital

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 the Chicago 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

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.”