Weekend Listening: For-Profit Hospice Care As Big Business

In this 2009 file photo, Dr. Joel Policzer checks on Lillian Landry in the hospice wing of an Oakland Park, Fla. hospital. Unlike most of Policzer’s patients she made end-of-life decisions. (AP File)

In this 2009 file photo, Dr. Joel Policzer checks on Lillian Landry in the hospice wing of an Oakland Park, Fla. hospital. Unlike most of Policzer’s patients she made end-of-life decisions. (AP File)

Say it ain’t so. A great many of us have found hospice services to be lifesavers — or perhaps I should say deathsavers — when loved ones were dying. But this week, On Point aired a particularly eye-opening segment about the financially questionable side of for-profit hospice care — yet another area where American health care may go awry in pursuit of lucre. Listen to the hour here, and here is On Point producer Stefano Kotsonis’ write-up the segment:

By Stefano Kotsonis
On Point producer

The for-profit hospice care is a growth industry in this country. But taxpayer beware. (And it is the taxpayer who is footing the bill, big-time.)

Investigations published in JAMA Internal Medicine (Journal of the American Medical Association), JMLE (Journal of Law, Medicine and Ethics), the Washington Post, Huffington Post, MEDPAC (which advices Congress on Medicare issues) and others do not paint a pretty picture.

Huffington Post investigative reporter Ben Hallman’s report is just out. It had an especially eye-catching headline: “Hospice, Inc: How Dying Became A Multibillion-Dollar Industry.”

On Point with Tom Ashbrook invited him on to talk about it this Wednesday, June 25.

Too many of these for-profit hospices are gaming U.S. law and cherry-picking patients, finding ways to reap big profits from the Medicare system, taking people who will take longer to die –- and sending them home if they take too long to die, so they can maximize profits. And some of them –- including big, national corporations — have been sued repeatedly by the federal government for their practices. Patient for patient, the for-profits cost the US Treasury a lot more money.

Our guests took pains to make clear that not all for-profits are bad and not all nonprofits are good. Continue reading

Aid-In-Dying Loophole: Advocates Want You To Know You Can Stop Eating And Drinking

Lee J. Haywood/flickr

Lee J. Haywood/flickr

By Nell Lake
Guest contributor

One sunny day in the spring of 2012, Kathleen Klein sat in a car by the California coastline with her 84-year-old mother, Jackie Wilton. The two women had been quietly gazing at the view, watching seagulls along the shore. “I’m ready to go,” Klein recalls her mother saying. “Not go home…Go.”

Klein didn’t need the clarification. Her mother had been speaking of wanting to die for years, ever since Wilton was diagnosed with an unspecified dementia a few years before. Wilton’s memory had become significantly impaired. But even before her diagnosis, Wilton was clear: She wanted to die before she became severely incapacitated.

Not long after the conversation by the water, Wilton asked Klein explicitly for help in ending her life. In interviews and a recent blog post, Klein remembers wanting to help her mother, but of being unwilling act illegally.

Even if Wilton had lived in one of the five states with an aid-in-dying law, she would not have qualified for such aid from a physician. That would have required a doctor’s determining that she would likely die within six months. Given the usual course of chronic, progressive dementia, Wilton would likely have lived much longer.

So Wilton needed another option for ending her life. Soon Klein heard a radio interview about “the possibility of helping someone die by letting them stop eating and drinking,” she wrote. “The way I understood it, it was the only legal form of assisted suicide.”

Klein mentioned the scenario to her mother. Wilton said she would think about it. A few days later, Wilton again mentioned wanting to die. “I asked her if she remembered the idea I had run by her. She didn’t, so I told her again. I suggested we give it a try (a ‘dry run,’ we called it) for a day and see if she wanted to continue.”

Wilton began the “dry run” on April 28, 2012.

No Food, No Drink

Most often referred to as VSED — voluntary stopping of eating and drinking — the practice of giving up food and drink in order to hasten one’s death is being increasingly publicized by aid-in-dying advocates as a legal alternative to physician-assisted suicide.

VSED is legal everywhere, even in states without aid-in-dying laws, and in cases in which a person, like Wilton, would not qualify for assistance with dying even in those states.  Compassion and Choices, a leading “death with dignity” organization, is beginning to more actively promote VSED as an option because “it’s something that patients can openly pursue, in open dialogue with their physicians, with the support of hospice,” says Barbara Coombs Lee, the group’s director. “We do want to make it more public. We want to make it more visible because it upholds the truth that ultimately patients should be and are in charge. That’s kind of a consciousness-raising task. Continue reading

Share The Story Behind Your Opinion On Assisted Suicide — Here’s Mine

(Photo illustration by Alex Kingsbury/WBUR)

Yesterday, we took a look at the contributions flowing to both sides of Question 2, the measure on assisted suicide that is on next month’s Massachusetts ballot.

As I noted, I was struck by the hundreds of small individual contributors to support Question 2, also known as Death With Dignity — about 500, by my rough count. Several dozen contributed to the opposition as well.

And here’s what I thought: I bet just about every one of the people on either side of the issue has a story. They’ve witnessed a death, and that experience influenced their opinion. So here’s an open invitation: Won’t you share your story in the Comments section below?

Here’s mine:

As I’ve written here before, my mother was in a terrible accident that left her in a persistent vegetative state, and when all hope was gone, we brought her home to die in accordance with her very clear wishes.

We couldn’t just give her an overdose. But we could “withhold care,” so we stopped her tube feedings to let her effectively starve to death. She lay in a hospital bed at home for nine days, slowly fading. Even knowing her wishes, and with support from the most saintly and sensitive hospice workers, it was a nightmare.

At one point, a hospice doctor told us that if my mother showed any signs of discomfort, her morphine dose could be increased. I remember snapping at him something like: “Why in the world would we wait for her to show ‘signs of discomfort’? Crank the morphine all the way up now! Why let there be even a chance of pain? The point here is for her to die, and if the morphine depresses her breathing and hastens that along, so much the better!”

Continue reading

‘I Try To Share All Of My Heart’: Hospice Staffer Wins Major Prize

Hospice worker and Schwartz Center prizewinner Vilma Barrios with a patient

At its huge annual dinner in Boston last night, the non-profit Schwartz Center for Compassionate Healthcare awarded this year’s top caregiving prize to Vilma Barrios — the first hospice worker and first nursing assistant to receive the $5,000 honor.

Her moving speech is below, as provided by the Schwartz Center. What struck me most is that Vilma, an immigrant from Guatemala, sees her work with dying patients as “very simple” — “I try to share all of my heart with my patients.” But I can imagine few things more complex than opening up to a patient who is guaranteed to die soon. I love the thought of a great banquet hall of 2,000 people all bowing before the power of a heart big and strong enough to do that.

First, though, also from the Center, here’s a letter from the daughter of one of Vilma’s patients, beautifully illustrating the depth of gratitude that many of us feel for special caregivers:

“Our family has never met anyone quite like Vilma. Late in 2007, when she came on the scene, my Dad had already gone through several caregivers. To say that my Dad had a strong personality would be putting it mildly. He had always been one of those no nonsense kind of guys, and even more so as he neared the end of his life when his brain was a bit short-circuited by the drugs he received to cope with the pain.

Vilma had that magic touch with Dad. He would even let her take care of his personal hygiene in the way no one had been allowed to. She earned that right through her patience and her wonderful persistent humor. We all fell in love with Vilma, and she became another sister in our family. Vilma would often come to see Dad on her off hours, just to check on him, even though she knew he had other caregivers there. Even when he ranted at her or complained or yelled, Vilma was patient and full of love and good humor and the fullest measure of compassion. She wanted to be there at the end, and she cried with us as Dad took his last breath. She rode with us to the memorial service and to the cemetery. She was his friend in the truest sense and remains a beloved member of our family.”

And now for Vilma’s speech: Continue reading

Massachusetts Unveils Plan For Better Dying

You’d never know it from all the national polemics about “death panels” and “pulling the plug on Grandma,” but in fact, there’s a whole lot of consensus around what ought to be done to help people die better.

That’s according to Dr. Lachlan Forrow, chairman of the “Massachusetts Expert Panel On End-Of-Life Care,” which laid out its plan today for how the state can begin to improve the end. Everybody the panel consulted, Dr. Forrow said, “agrees on what the health care system needs to do, and I mean everyone,” from those who think dying people get too much care to those who worry that dying people get too little. They agree on three points, he said:

-From the time of diagnosis, as early as possible, every patient with a serious illness that may be fatal should be fully informed of the range of ways they might be taken care of. Families should be informed as well.

-If the patient has preferences among that range, either for efforts to prolong life or for, say, as much time at home as possible, whatever those preferences are should be known, documented, and always available when decisions are going to be made.

-Those preferences should always be respected when a person receives care.

“Any other approach would be un-American,” Dr. Forrow said. “What we lack, however, is a health care system that reliably assures that this happens, not just sometimes but all the time, and our recommendations are designed to assure that.”

Just a glance at this graph is enough to see part of the problem: Most of us want to die at home; few do.

So what is to be done? The panel issued a long list of recommendations, including:

-A public awareness campaign, launched by next January, to educate people about their options and encourage them to plan for their own end-stages.

– Spread MOLST statewide by 2014. Medical Orders for Life Sustaining Treatment is a sort of end-of-life menu on a bright pink sheet that follows a patient wherever he goes. We wrote about it here.

-Also by 2014, require institutions that care for patients with “life-limiting” conditions to systematically identify patients who could benefit from hospice or palliative care and help them get it. Continue reading