end-of-life care


‘Good Death’ Still Eludes U.S. Health System Despite Decades Of Debate



By Richard Knox

Death is back in the news again. And it should be.

Death comes to us all. And in the U.S. at least, it’s increasingly likely to be inhumane, institutional and full of misery. That’s according to a growing body of evidence, including:

•A report last month from The National Institute of Medicine called “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” It’s a 500-page indictment of U.S. end-of-life care.

•A new book by Boston writer-surgeon Atul Gawande on the subject called “Being Mortal: Medicine and What Matters in the End.”

•And recently, a must-read New York Times article — a powerful case study of how the American way of death has gone badly awry.

From these and other sources, one thing is clear: Too many Americans are still dying in hospitals and nursing homes; getting aggressive but futile care; and suffering more from the complications of treatment than from the pain of dying.

And with about 10,000 Baby Boomers turning 65 every day, it’s way past time to do something about it. “What is it going to take to ensure that patients in this country are receiving the right care at the right time in the right location, consistent with the right to choose?” Dr. Joan Teno wonders. “These are the things that keep me up at night.”

Teno, a Brown University faculty member, is among 21 authors of the recently issued Institute of Medicine report on dying in America. Continue reading

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

McInnis House Provides End-Of-Life Care For The Undocumented And Homeless

Kervin Alleyne, 67, receives end-of-life care at the Barbara McInnis House in Boston, which has 100 beds for homeless and undocumented individuals. He says it’s “one of the best places that a person could ever be.” (Gabrielle Emanuel/WBUR)

Kervin Alleyne, 67, receives end-of-life care at the Barbara McInnis House in Boston, which has 100 beds for homeless and undocumented individuals. He says it’s “one of the best places that a person could ever be.” (Gabrielle Emanuel/WBUR)

The roughly 160,000 undocumented immigrants in Massachusetts do not have access to most public health insurance programs. Some doctors and nurses in Boston have noticed this can pose particular challenges at the end of life, where the undocumented do not have access to nursing facilities or hospice care.

Some health care providers are stepping in to help these undocumented and dying individuals.

‘This Place Is Special’

“How’s your breathing been feeling?” the nurse asks. “Take a deep breath. Has the pain gotten any better?”

“Yes, I tolerate it better,” Kervin Alleyne says, reassuring his nurse that the bone pain he feels is manageable.

Alleyne is dying of metastatic prostate cancer, but he is not one to complain.

He looks around the room at the three other hospital beds, and then out the window to the concrete and traffic of Boston’s South End.

“One of the best places that a person could ever be,” he says. “This place is great. This place is special. Trust me. Trust me.”

Before arriving at this special place, Alleyne was staying in a homeless shelter.

But for the past year he’s been at the Barbara McInnis House. It has over 100 medical beds for homeless individuals.

“We help individuals who are too sick to be in shelters or on the streets but not sick enough to actually warrant a medical bed in a hospital,” explains Denise De Las Nueces, the McInnis House medical director.

Usually homeless patients are discharged after about a dozen days — when they are healthy enough to go back to the streets.

But what about homeless patients who are dying? Continue reading

DIY Death: A Priest Opens Champagne, And Other Personal Funeral Moments

(Alex Kingsbury/WBUR)

(Alex Kingsbury/WBUR)

In case you missed Radio Boston yesterday, take a listen to this thoughtful conversation on do-it-yourself funeral arrangements, based on our wildly popular post on the topic (with over 3000 comments on NPR’s Facebook page; and over 70,000 CommonHealth Facebook shares so far).

Even though caring for our own dead loved ones used to be the norm (right up until the the last quarter of the 19th century) many people responded to our story on modern home funerals with a resounding: “Who knew?”

Transatlantic99 wrote, “I had no idea that this was allowed and will seriously consider staying out of funeral homes when the time comes.”

And a surprising number of commenters described their own experience with personal funerals, for instance, Boomer: “We have done two funerals from home to grave and will do it from now on…I am no longer afraid of dead bodies. The moment of death as each happened was a little traumatic. But the death care was peaceful, poignant, even humorous as we all worked together. Caring for our dead felt natural and right; fulfilling our responsibility. My family is agreed we dislike funeral businesses and having strangers with a vested financial interest involved with such a personal occasion. We dislike the exorbitant and unconscionable markups in costs at funeral businesses. The reaction I get from friends is, ‘I didn’t know that was legal!’ then, ‘How do I do it!?'”

The Radio Boston program touched on a number of topics we didn’t get into in the post, for example, what to do if a loved one dies in the hospital and you want to take the body home. (Short answer: it’s pretty much always legal, but some hospitals make it easier than others.)

Josh Slocum, executive director of the Funeral Consumers Alliance, a Burlington, Vermont nonprofit, was on the show answering questions and offering important context. “Human beings have been caring for their dead since we walked upright,” Slocum said, adding that when people actually confront death they tend to be much more emotionally resilient than they imagine. He said in the 10 years he’s been working with families in this arena he’s found that when a survivor cares for a dead loved one — that is, actually does something — it truly helps the grieving process and makes people feel a little less powerless. “Actually having something to do that was hands on,” he said, whether washing the dead body or making food for people coming to the house to pay respects, “was better therapy then they could pay for at a counselor’s office.”

My favorite comment came from a Belmont, Mass. priest, Patrick, who called in to the program.

Patrick said that several years ago, some parishioners asked for his help to try to figure out home funeral arrangements without using a funeral home. This family ended up “waking” their mother at home for two days, Patrick said, and the intimacy of the experience shifted his own thinking on death when his father died. “It changed my own take on what we would do as a family,” Patrick said. His father died at home in Stoneham after receiving hospice care. “Because I’d had this experience with parishioners, I didn’t feel that sense of rush that one normally feels at the time of death,” Patrick said. “My father died at 2 am, and we didn’t call the funeral home until that morning. We sat around his bed, we opened a bottle of champagne, we toasted him, we remembered him, we celebrated him.” This private family time, Patrick agreed, was invaluable.

So, readers, when you’re sitting around the Thanksgiving table later this week, why not raise some of these important issues with your family? How do you want to die? And how would you envision caring for loved ones after death?

Tip-Toeing Toward Conversations About Death

Having a conversation about the way you want to die can be uncomfortable. But that means many of us aren’t ready when our parents, spouse or children face a startling diagnosis or have a tragic accident. And how about for yourself? Do you have a health proxy, someone who knows what to tell doctors if you are unconscious?

deathA state law passed earlier this year urges more of us to make preparations for these wrenching experiences by requiring that doctors offer information on end-of-life care to “appropriate” patients. The new law does not require counseling or signatures on forms, but the hope is that when a doctor hands a patient a pamphlet, it may start a conversation.

“Sixty-seven percent of people want to die at home and only 24 percent did,” said Public Health Commissioner Cheryl Bartlett, citing a survey of Massachusetts residents. “If we have these conversations more, people will be more comfortable helping to make these choices come true.”

The Department of Public Health has just released draft rules for the law. It defines an “appropriate” patient as someone who has a terminal illness that is expected to cause death within six months and who would benefit from hospice and palliative care. But some doctors are already taking a much broader view.

“Our goal is that all patients have the opportunity to at least designate a surrogate,” said Eliza Shulman, chief of palliative care at Harvard Vanguard Medical Associates. “And that all of our most vulnerable patients have their wishes very clearly documented so that they are able to get care that’s aligned with their goals and practices.”

Continue reading

The Death Conversation: Easier Said Than Done

It’s one thing to know deep down you really should talk about death far before it happens; but it’s a very different thing to actually converse about the details of dying with the people you love.

That “disconnect” — between what you want and what you do — is the key finding from a new survey by the folks who launched The Conversation Project, a national effort to get people talking about the nitty gritty details about end-of-life care.

The survey found that 90 percent of Americans know they should have the “death conversation” but only 30 percent have done it. (One person who has done it is CommonHealth co-host Carey Goldberg; you can listen to her conversation with her 86-year-old father here.)

Here’s what Ellen Goodman, founder of The Conversation Project, said via email:

“I’m pretty amazed that 90 percent of Americans agree on anything! Ten years ago, we didn’t yet realize that having conversations about the care we want at the end of life was ‘important.’ Now we do. That’s tremendous progress.”

“At the same time, the survey shows that only 30 percent of Americans have actually had these conversations about end of life. So there’s a big gap between what we know and what we do. We are still reticent to start these conversations. We think that it’s too soon, and we wait for the other person to start talking. So our goal is to help people to close the gap. If you’re reluctant, you aren’t alone. If you know you should talk to the people you love before it’s too late, you are in the 90 percent! The Conversation Project has the stories and the tools that can really help.”

Why is it so hard to have these discussions? Here’s more insight from The Conversation Project (which was launched in collaboration with the Cambridge-based Institute for Healthcare Improvement) news release:

There are a host of reasons why Americans haven’t discussed their own wishes. Top reasons from the survey include:

–It’s not something they need to worry about at this point in life (29%), they aren’t sick yet (23%) Continue reading

As Assisted Suicide Goes To Wire, Some Comfort From A Pain Specialist

(Photo illustration by Alex Kingsbury/WBUR)

According to the latest Massachusetts poll, just out from Western New England University Polling Institute, the assisted suicide question on tomorrow’s ballot is too close to call. Among 535 likely voters surveyed several days ago, the institute reports, “44 percent support allowing terminally ill patients to legally obtain medication to use to end their lives, while 42 percent are opposed. Fourteen percent of likely voters said they did not know or declined to answer the question.”

Question 2, also known as “Death With Dignity,” has surely spurred a valuable discussion about how we die; the most recent opinion in major local media came from the Boston Globe columnist Yvonne Abraham, whose mother’s recently diagnosed Alzheimer’s disease influenced her. But I have also found the conversation deeply disturbing, because so many commenters have shared horrifying stories about bad deaths. One comment on a recent CommonHealth post began: “I served until recently as a hospice chaplain. In my six years in this work, I was often surprised by family members bursting out with their true feelings and saying, “You wouldn’t let a dog suffer like this.”

I have my fair share of existential terror, and stories like these don’t help. It’s bad enough that I have to die; do I have to die painfully? The debate around Question 2 has further confused me. Opponents of the measure argue that pain can be controlled so well that fear of suffering — or suffering itself — is no reason for suicide. But if so, how to explain all the harrowing personal stories of bad ends?

Dan Carr

Dr. Daniel B. Carr of Tufts University School of Medicine (Alonso Nichols, Tufts University)

I turned for guidance to Dr. Daniel B. Carr, director of the Tufts Program on Pain Research, Education and Policy (which has not taken a position on Question 2) and a professor at Tufts University School of Medicine. What, I asked him, is the truth about dying and pain? Is it really as bad as some stories suggest — or can it really be as good as the opponents say?

Let me begin with the good news because it’s so nice to hear some. Massachusetts, he said, is extraordinarily rich in top-flight medical care for the end of life. It’s a pity, he said, that the political debate around Question 2 may distract people from awareness that we have “a wonderful series of support systems in Massachusetts for hospice and palliative care.” He particularly recommended the Hospice and Palliative Care Federation of Massachusetts.

Now to my question. Like any good academic, Dr. Carr had to back up first:

“First of all, the totality of suffering at the end of life often involves pain, but it often reflects other reasons as well. For instance, air hunger in someone who has pulmonary disease, or sleeplessness in someone with so-called Lou Gehrig’s disease. So pain control is a major part of palliative care, but palliative care is broader than just pain control. The concept of “total pain” has been in the literature for years. “Total pain” includes physical pain but also involves spiritual or existential pain and psychological burdens. So there’s more to palliative care than pain control, and there’s more to pain than just its intensity.

You can control about 90% of the pain in people with cancer.

In the clear majority — in most cases of, say, cancer-related pain — the figure that people quote is from studies applying a very simple three-step ladder that was developed by the World Health Organization: You can control about 90% of the pain in people with cancer. Now, i’m blending together different cancers, different stages and resting pain versus movement pain. But if you were to say: ‘Can you control most people’s pain with simple, non-invasive measures,’ the answer is yes. That’s been studied.

As for people who have more difficult pain problems despite moving up the medication ladder, by providing a suitable nerve block or infusion, you can probably control the majority of the remainder. Continue reading

Primer: Pro And Con On Mass. Assisted Suicide Ballot Measure

John Kelly and Marcia Angell

Con and pro: John Kelly, disabilities rights activist and founder of Second Thoughts, who opposes Question 2; and Dr. Marcia Angell, senior lecturer in social medicine at Harvard Medical School and former editor of the New England Journal of Medicine, who backs the measure. (Jesse Costa/WBUR)

Come November, if you live in Massachusetts, you’ll face a vote on a life-and-death issue (I mean, even more directly life-and-death than Obama v. Romney.) It’s Question 2 on the ballot, also known as the Death With Dignity initiative and the physician-assisted suicide measure.

It’s a big, rich debate infused by reports from earlier such measures in Oregon and Washington, and this 24-minute segment on Radio Boston is a great way to acquaint yourself with it.

(Points in dispute include even the language used: One of the measure’s proponents, Dr. Marcia Angell, notes: “These patients are dying. That’s why most proponents don’t like the term ‘physician-assisted suicide,’ because that compares it with a typical suicide, which involves somebody with a normal life expectancy choosing death over life. These people, unfortunately, don’t have that choice. They’re dying. And the only issue is the exact timing and the manner of death.”)

In case you run out of time yourself, here’s a telling story from the end of the segment, from a caller named Karen in Acton:

She didn’t want her son to remember her a way she didn’t want to be remembered.

My sister lived in Oregon, Eugene Oregon to be exact, and she had a son who had just turned 16. She was diagnosed with — and did have — appendix cancer, very rare and very lethal. She was only 52 yrs old when she died. This option, which was not easy to get — these end-of-life pills were not easy to get, she had to find a doctor who would agree to it, as you stated earlier. She had to have this terminal diagnosis, which there was no doubting. She was emaciated, she looked as if she belonged in a concentration camp near the end. But she wanted to have as much time with her son as possible. And we had the palliative care. I helped get everything in place so she could stay at home. And her knowing that it was her choice — she never used the pills. But she had them in her house because she did not want to get to the point where she could not have — she didn’t want her son to remember her a way she didn’t want to be remembered. Continue reading

Inspiring Words And Modern Hippocratic Oath For Doctors-To-Be


(Gouwenaar, Wikimedia Commons)

Tufts Medical School held its annual “White Coat” ceremony this weekend to induct some 200 new students into the profession — and yes, to give them the white coats that will mark them ever after as medical staff.

The event included a poetic speech, excerpted below, by Dr. Beth Lown, medical director of The Schwartz Center for Compassionate Healthcare, and the students recited the “Modern Hippocratic Oath.”

“The what?” I asked, ever the last to know. “There’s a new oath?”

Turns out controversy has long swirled around the 2500-year-old oath, as Nova describes in a fascinating 2001 look here. Nova includes the full and quite pagan original text, beginning “I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfill according to my ability and judgment this oath and this covenant.”

It is a mix of eternal and utterly outdated pledges, and my eyes widened when I read that it includes a sentence relevant to the physician-assisted suicide measure on this November’s Massachusetts ballot: “I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect.”

The modern version has this instead:

Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

The modern oath, which is now extremely widespread, was written in 1964 by the late Dr. Louis Lasagna, Academic Dean of the School of Medicine at Tufts, and it exudes far more compassion, nuance and indeed humility than old Hippocrates. It includes: Continue reading

End-Of-Life Discussion As Part Of Mass. Health Reform?

Dr. Lachlan Forrow

Dr. Lachlan Forrow directs ethics and palliative care programs at Beth Israel Deaconess Medical Center. (Martha Bebinger/WBUR)

WBUR’s Martha Bebinger reports today on a potential piece of Massachusetts health reform that many may have missed: Last week, when the state Senate passed its version of a bill focused mainly on how to cut health costs, it also passed an amendment that would require health care staffers to discuss end-of-life options with dying patients. Check out her full story.

Now, if you’re getting a sudden scary case of “death panel” deja vu — and Martha even includes three-year-old soundbites from Sarah Palin about “bureaucrats” making life-and-death decisions — here’s a heartening thought:

“People in Massachusetts are smarter than everywhere else,” said Sen. Richard Moore, laughing. Moore sponsored the the end-of-life counseling amendment. “No, seriously, we approached this in the right way, bringing in people who had experience with it.”

Martha adds that Moore stresses that the state would not require that patients make end-of-life plans or even have the conversation if they don’t want to.

How will the Massachusetts House react to adding end-of-life talk to health reform? Please stay tuned as they take up their own health reform bill in the coming weeks. And tune in to Radio Boston today for a segment on the topic.