Hoping To Live, These Doctors Want A Choice In How They Die
Dr. Dan Swangard (Photo by Anna Gorman/KHN).
By Anna Gorman KHN
SAN FRANCISCO — Dan Swangard knows what death looks like.
As a physician, he has seen patients die in hospitals, hooked to morphine drips and overcome with anxiety.
He has watched dying drag on for weeks or months as terrified relatives stand by helplessly.
Recently, however, his thoughts about how seriously ill people die have become personal. Swangard was diagnosed in 2013 with a rare form of metastatic cancer.
To remove the cancer, surgeons took out parts of his pancreas and liver, as well as his entire spleen and gallbladder.
The operation was successful but Swangard, 48, knows there’s a strong chance the disease will return. And if he gets to a point where there’s nothing more medicine can do, he wants to be able to control when and how his life ends.
“It’s very real for me,” said Swangard, who lives in Bolinas, Calif. “This could be my own issue a year from now.”
That’s one of the reasons Swangard joined a California lawsuit last month seeking to let doctors prescribe lethal medications to certain patients who want to hasten death. If he were given only months to live, Swangard said, he can’t say for certain whether he would take them.
The Utah legislature took a step last week into territory where state lawmakers rarely tread.
It passed a law giving children conceived via sperm donation access to the medical histories of their biological fathers. The law itself stirred no controversy. The oddity was that the legislature ventured into the area of “assisted reproduction” at all.
Assisted reproductive technology (ART) helps infertile couples to conceive. Compared to many other industrialized nations, neither the U.S. nor state governments do much to oversee the multibillion-dollar industry.
“The United States is the Wild West of the fertility industry.”
“The United States is the Wild West of the fertility industry,” Marcy Darnovsky, executive director of the Center for Genetics and Society said, echoing a description used by many critics of the regulatory environment surrounding ART. Continue reading →
We prepare for life’s most important events – education, weddings, birthdays and vacations – but serious illnesses and death are rarely discussed. Now is the time to have the conversation.
Ira Byock, M.D., author of Dying Well and The Best Care Possible, will describe what it means to “die well” and highlight how we can change the way we plan for and experience the end of life.
Dr. Byock is a leading palliative care physician and public advocate for improving care through the end of life. He serves as executive director and chief medical officer of the Providence Institute for Human Caring of Providence Health & Services.
He is also Professor of Medicine and Community & Family Medicine at the Geisel School of Medicine at Dartmouth. Continue reading →
Death-with-dignity advocate Brittany Maynard and husband Dan Diaz at their wedding. Maynard’s death by lethal injection in November drew attention to the aid-in-dying issue now being considered in several states. (PRNewsFoto/Compassion & Choices)
By Michael Ollove Stateline
After he decided to hasten his death, Erwin Byrnes, who had advanced Parkinson’s disease, set about planning all the details of the memorial service that would follow.
He designated the nearby DoubleTree Hotel in Missoula, Montana, as the venue. He asked his old friend Gene to serve as master of ceremonies. He selected the entire menu—shrimp (because no one doesn’t like shrimp), sandwiches, beer and the hotel’s oatmeal cookies with chocolate and walnuts that he relished. He selected music that would soothe his mourners, including the Frank Sinatra tune “September Song” and Louis Armstrong’s classic “It’s a Wonderful World.”
It came off just as the former high school principal had wished—just as his death had five days earlier on St. Patrick’s Day last year. Byrnes, later described by his wife as “a good Irishman,” had selected that day as most suitable for his departure from this world. On that morning, with his family surrounding him, he squeezed a valve on a tube leading to his body, sending a fatal barbiturate his physician had legally prescribed coursing into his bloodstream.
“It was a beautiful way to be able to end his life,” said Erwin’s wife of nearly 64 years. “In peace and in control and with dignity.”
It happened only because of a Montana Supreme Court decision in 2009 that has put the state in company with four others that allow assisted suicide or, as proponents prefer, “death with dignity” or “medical aid-in-dying.” The states permit physicians to prescribe lethal medications for terminally ill patients, who then self-administer the medications. Continue reading →
By Charles Ornstein ProPublica This story was co-published with the New York Times.
Anita Chanko could not sleep. At 4 a.m., on an August night in 2012, she settled onto the couch in her Yorkville living room with her dog, Daisy, and her parrot, Elliott, and flipped on the DVR.
On came the prior night’s episode of ” NY Med,” the popular real-life medical series set at NewYork-Presbyterian Hospital, starring Dr. Mehmet Oz. Mrs. Chanko, 75, was a fan of the show and others like it.
” . . . even with the blurred picture, you could tell it was him. You could hear his speech pattern. I hear my husband say, ‘Does my wife know I’m here?’.”
“It starts off, there’s a woman with stomach cancer and her family, and then there’s somebody with a problem with their baby, I think it was a heart,” she remembered. “And then I see the doctor that treated my husband.”
Mark Chanko, her husband, had died 16 months earlier, in April 2011, after being struck by a sanitation truck while crossing a street near his home. The doctors and nurses at NewYork-Presbyterian Hospital/Weill Cornell Medical Center tried in vain to save his life.
On the TV screen, she saw the chief surgery resident Sebastian Schubl, responding to an emergency in which a man is hit by a vehicle.
“And then I see, even with the blurred picture, you could tell it was him,” she said. “You could hear his speech pattern. I hear my husband say, ‘Does my wife know I’m here?’.”
There was no doubt in her mind: The blurred-out man moaning in pain was her husband of almost 46 years, the Korean War veteran she met in a support group for parents without partners.
“I hear them saying his blood pressure is falling. I hear them getting out the paddles and then I hear them saying, ‘OK, are you ready to pronounce him?’.”
She clenched her fists so tightly that “the palms of my hands almost looked like stigmata” and her mouth got so dry that her tongue stuck to the roof “as if I had just eaten a whole jar of peanut butter.”
The influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.
But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.
On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.
Over the years, Illinois Attorney General Lisa Madigan has consistently heard “horror stories” about the abuse or neglect of nursing home residents. Now she is trying to bring such cruelty out of the shadows and into clear view.
Madigan’s office is drafting legislation, likely to be introduced in 2015, which would allow Illinois nursing home residents and their families to place cameras in their rooms to help protect them.
“Residents and family members should have the option, for their own peace of mind, to monitor what is taking place,” said Madigan. “If something goes wrong, you can see what actually happened.”
If the measure is approved, Illinois would join at least four other states—New Mexico, Oklahoma, Texas and Washington—that have laws or regulations allowing residents to maintain cameras in their rooms.
If the measure is approved, Illinois would join at least four other states—New Mexico, Oklahoma, Texas and Washington—that have laws or regulations allowing residents to maintain cameras in their rooms. In Maryland, cameras can be placed in a resident’s room, but only if the facility permits them, according to state guidelines. Continue reading →
Paula and Ron Faber walk their dog Millie in 2009, between cancer diagnoses. (Photo by Shelley Seccombe)
By Fred Mogul, WNYC SEP 22, 2014
This story is part of a partnership that includes WNYC, NPR and Kaiser Health News.
It was September 2012 and it was life-long smoker Paula Faber’s third cancer in a decade, but she did not hesitate.
“She was going to fight it every inch of the way,” says her husband Ron Faber.
“I would have rather have had a really okay four-and-a half months than this endless set of treatments.”
By August 2013 after much fighting, Paula Faber died at age 72. Ron Faber now regrets the intervening 11 months of chemotherapy, radiation, painkillers and side effects that reduced his wife to 67 pounds of frayed nerves.
Instead, the pain could have been managed so she could focus on the quality of life.
“I would have rather have had a really okay four-and-a half months than this endless set of treatments,” the stage actor said.
As they confronted Paula’s terminal diagnosis, the decision the Fabers made is among the most difficult anyone can make.
But it turns out that in the New York metropolitan region, patients opt for aggressive treatment much more often than other Americans.Continue reading →
It is time for conversations about death to become a part of life.
That is one of the themes of a 500-page report, titled “Dying In America,” releasedWednesday by the Institute of Medicine.
The report suggests that the first end-of-life conversation could coincide with a cherished American milestone: getting a driver’s license at 16, the first time a person weighs what it means to be an organ donor.
Follow-up conversations with a counselor, nurse or social worker should come at other points early in life, such as turning 18 or getting married.
The idea, according to the IOM, is to “help normalize the advance care planning process by starting it early, to identify a health care agent, and to obtain guidance in the event of a rare catastrophic event.”
The IOM plans to spend the next year holding meetings around the country to spark conversations about the report’s findings and recommendations. “The time is now for our nation to develop a modernized end-of-life care system,” said Dr. Victor Dzau, president of the IOM.Continue reading →
A few years ago, Illinois’ Medicaid program for the poor noticed some odd trends in its billings for group psychotherapy sessions.
Nursing home residents were being taken several times a week to off-site locations, and Medicaid was picking up the tab for both the services and the transportation.
And then there was this: The sessions were often being performed by obstetrician/gynecologists, oncologists and urologists — “people who didn’t have any training really in psychiatry,” Medicaid director Theresa Eagleson recalled.
It seems that every time researchers estimate how often a medical mistake contributes to a hospital patient’s death, the numbers come out worse.
In 1999, the Institute of Medicine published the famous “To Err Is Human” report, which dropped a bombshell on the medical community by reporting that up to 98,000 people a year die because of mistakes in hospitals.
The number was initially disputed, but is now widely accepted by doctors and hospital officials — and quoted ubiquitously in the media.
In 2010, the Office of Inspector General for Health and Human Services said that bad hospital care contributed to the deaths of 180,000 patients in Medicare alone in a given year.
Now comes a study in the current issue of the Journal of Patient Safety that says the numbers may be much higher — between 210,000 and 440,000 patients each year who go to the hospital for care suffer some type of preventable harm that contributes to their death, the study says.
The new estimates were developed by John T. James, atoxicologist at NASA’s space center in Houston who runs an advocacy organization called Patient Safety America. James has also written a book about the death of his 19-year-old son after what James maintains was negligent hospital care.
Asked about the higher estimates, a spokesman for the American Hospital Association said the group has more confidence in the IOM’s estimate of 98,000 deaths. ProPublica asked three prominent patient safety researchers to review James’ study, however, and all said his methods and findings were credible.
What’s the right number? Nobody knows for sure. There’s never been an actual count of how many patients experience preventable harm. So we’re left with approximations, which are imperfect in part because of inaccuracies in medical records and the reluctance of some providers to report mistakes.
Patient safety experts say measuring the problem is nonetheless important because estimates bring awareness and research dollars to a major public health problem that persists despite decades of improvement efforts.
“We need to get a sense of the magnitude of this,” James said in an interview.
James based his estimates on the findings of four recent studies that identified preventable harm suffered by patients – known as “adverse events” in the medical vernacular – using use a screening method called the Global Trigger Tool, which guides reviewers through medical records, searching for signs of infection, injury or error. Medical records flagged during the initial screening are reviewed by a doctor, who determines the extent of the harm.
In the four studies, which examined records of more than 4,200 patients hospitalized between 2002 and 2008, researchers found serious adverse events in as many as 21 percent of cases reviewed and rates of lethal adverse events as high as 1.4 percent of cases.
By combining the findings and extrapolating across 34 million hospitalizations in 2007, James concluded that preventable errors contribute to the deaths of 210,000 hospital patients annually.
That is the baseline. The actual number more than doubles, James reasoned, because the trigger tool doesn’t catch errors in which treatment should have been provided but wasn’t, because it’s known that medical records are missing some evidence of harm, and because diagnostic errors aren’t captured.
An estimate of 440,000 deaths from care in hospitals “is roughly one-sixth of all deaths that occur in the United States each year,” James wrote in his study. He also cited other research that’s shown hospital reporting systems and peer-review capture only a fraction of patient harm or negligent care.
“Perhaps it is time for a national patient bill of rights for hospitalized patients,” James wrote. “All evidence points to the need for much more patient involvement in identifying harmful events and participating in rigorous follow-up investigations to identify root causes.”
Dr. Lucian Leape, a Harvard pediatrician who is referred to the “father of patient safety,” was on the committee that wrote the “To Err Is Human” report. He told ProPublica that he has confidence in the four studies and the estimate by James.
Members of the Institute of Medicine committee knew at the time that their estimate of medical errors was low, he said. “It was based on a rather crude method compared to what we do now,” Leape said. Plus, medicine has become much more complex in recent decades, which leads to more mistakes, he said.
Dr. David Classen, one of the leading developers of the Global Trigger Tool, said the James study is a sound use of the tool and a “great contribution.” He said it’s important to update the numbers from the “To Err Is Human” report because in addition to the obvious suffering, preventable harm leads to enormous financial costs.
Dr. Marty Makary, a surgeon at The Johns Hopkins Hospital whose book “Unaccountable” calls for greater transparency in health care, said the James estimate shows that eliminating medical errors must become a national priority.
He said it’s also important to increase the awareness of the potential of unintended consequences when doctors perform procedure and tests. The risk of harm needs to be factored into conversations with patients, he said.
Leape, Classen and Makary all said it’s time to stop citing the 98,000 number.
Still, hospital association spokesman Akin Demehin said the group is sticking with the Institute of Medicine’s estimate. Demehin said the IOM figure is based on a larger sampling of medical charts and that there’s no consensus the Global Trigger Tool can be used to make a nationwide estimate. He said the tool is better suited for use in individual hospitals.
The AHA is not attempting to come up with its own estimate, Demehin said.
Dr. David Mayer, the vice president of quality and safety at Maryland-based MedStar Health, said people can make arguments about how many patient deaths are hastened by poor hospital care, but that’s not really the point. All the estimates, even on the low end, expose a crisis, he said.
“Way too many people are being harmed by unintentional medical error,” Mayer said, “and it needs to be corrected.”
Dr. Linda Smith meets with patient Dawn Dillard at Anchorage’s Providence hospital. Smith’s specialty is palliative care, she helps patients live with terminal or life-altering illnesses (Photo by Annie Feidt/Alaska Public Media).
By Annie Feidt, Alaska Public Radio
Dr. Linda Smith walks into a room at Providence Alaska Medical Center, ready with a stethoscope and a huge grin.
She teases her patient, Dawn Dillard, saying that her spiky hair recently resembled a “faux hawk.”
Dillard found out she had uterine cancer a year ago. Her oncologist gave her a year to live. The 57-year-old has beaten those odds, but now her kidneys are failing.
After the laughs are over, Smith sits down on the edge of Dillard’s bed, leans in, and starts talking about a surgical procedure to help her kidneys.
Smith is a palliative care doctor, a specialty that is growing rapidly in the U.S. The idea is to help patients cope with a terminal or life-altering illness.
And unlike hospice care, it is not offered only in the final months of life. Smith works on pain management, coordinating care and even does some counseling. Dillard, who is now in chemotherapy again, really appreciates it.
“I can’t even say how much she’s helped me,” Dillard says. “Just little things. You know, showing me things like breathing techniques. Sort of like mediation, just ways to focus on things that are positive and happy rather than focusing on your sickness and how crappy you feel.”
Becoming A Better Listener
Dr. Linda Smith (Photo by Mark Meyer/For NPR).
Two years ago, Linda Smith was a very different kind of doctor.
She worked in the emergency room at the busy Anchorage hospital, where the goal was to quickly stabilize a patient and move on.
But two decades into her career, she started to question how she was caring for patients at the very end of their lives.
She remembers putting patients on breathing tubes and hearing family members say things like, “I know Dad didn’t want this, but we’re just not ready to let him go.”
“I started to have a lot of regret about doing things to people that were painful and uncomfortable and were prolonging their suffering,” Smith says. She thought, “if I only had the time to sit down with the family, I probably wouldn’t be doing these things.”
In 2011, Smith enrolled in a one-year palliative care fellowship at Providence. She had a lot to learn. She found out she was a bad listener. And she was abrupt. As an ER doctor, sometimes she was so busy she didn’t even sit down to deliver devastating news.
“I can remember saying to families things like, ‘I’m sorry, there’s nothing more I can do.’ And I realize now that sounds like abandonment to many people when you say you can’t do anything more. And the reality is I may not be able to do anything more to the patient that will make them survive, but there’s a lot more that I can do. I always can do more.”
A lot of what Smith does is talk to people. She doesn’t advocate for or against treatment, but she wants patients and their families to understand their decisions.
If a doctor puts in a breathing tube, for example, that may extend a patient’s life, but they won’t be able to eat or talk. If they die with a tube in, the family will miss hearing their last words.
So now Smith sits down for hard conversations and looks patients and their family members right in the eye. Earlier this year, she was called in to consult with the wife of a patient who was dying.
“When I entered the room,” Smith says, “The wife said to me, ‘I know who you are.’ And I said, ‘Oh. OK.’ And she said, ‘I don’t want to talk with you and I don’t want to like you because you’re here to talk about death and dying, aren’t you?'”
Smith had a short conversation with the woman, and left her a book on difficult end of life choices. She went back to visit her the next day.
“And she said, ‘You know, I so tried not to like you. And what you had to say. And I really realize that we need to have this discussion now, don’t we?’
“And I said, ‘When you’re ready, we’re ready to have that discussion.’ And she said, ‘I’m ready now,'” Smith recalls.
There’s a shortage of doctors who provide palliative care, and the need is growing as baby boomers slide towards old age.
Smith was planning to go back to the emergency room. But interactions like that one persuaded her to stay in palliative care. Now she works more and makes less money. Some days, she wonders if she’s crazy.
But then she gets to visit a patient like Dawn Dillard.
Back in her hospital room, Dillard and Smith talk about having a second procedure. Smith leaves and calls Dillard’s other doctors. They end up agreeing that the second procedure isn’t really necessary after all. So instead of staying another night in the hospital, Dillard is back home by the end of the day.
This story is part of a reporting partnership that includes APRN, NPR and Kaiser Health News.
This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.