From Pallimed blog: http://bit.ly/hYK14G
Jim Siegel said...
Christian -- Thanks much for this post and raising the question about the term "non-hospice palliative care.” From my marketing & communications perspective, I shy away from saying what something is not, because it reminds people more of “the not" and thus can be counterproductive. However, since so many health care professionals think palliative care and hospice care are synonymous, and almost everyone in the general public that I speak to about it thinks that as well, the directness of the expression is intriguing, because it attacks the misperception head on. Since superb communicator Diane uses the term, that sure is an endorsement. Also, you mention the palliative care elevator pitch, and in case this is useful for Pallimed readers, here’s the elevator pitch that we’ve adopted here at HealthCare Chaplaincy: “Palliative care matches patient wishes to treatment goals and reduces suffering.” PS. The cloud is one cool visual and thanks for the link to Wordle.
March 07, 2011
Larry Boggeln, MD said...
I like "non-hospice palliative care" for the same reason..attacking misperception directly. Nice succinct elevator pitch. I personally would amend it slightly, such as "Palliative Care is a medical specialty that reduces suffering through an interdisciplinary team, focusing on patient-identified treatment goals."
March 07, 2011
Lisa Morgan said...
Thanks for raising the language issue. The term non-hospice palliative care is a term that CAPC effectively used early on with clinical audiences (not patient/family) that didn't know palliative care could be provided upstream. I would not necessarily recommend that the term be used with patients/families/general public. Jim is correct to point out the problematic nature of defining something by what it is not. The palliative care field faces a communications challenge in this respect. Upstream patients and families who confuse palliative care and hospice do respond to being told bluntly that the two are different. This is because the explanation addresses a direct question already in their minds. Referring clinicians have told us that this directness is very helpful. However, people who don't know what palliative care is at all can become confused. CAPC is currently in the process of conducting major public opinion and messaging research that will help guide our definitions and messages now and into the future. Stay tuned later this spring!
March 07, 2011
Jim Siegel said...
Lisa and Larry -- Thanks for the helpful feedback. That CAPC is conducting major public opinion and messaging research to help develop definitions and messages is hugely valuable and another instance where CAPC is taking the lead in a vital area. I like the amended elevator pitch, but I think that works more for the professional audience than the public audience. I recognize that I was not clear that the general public is the target of the elevator pitch that I cited. A second talking point that we do make is that palliative care is delivered by a transdisciplinary team that includes physicians, nurses, professional chaplains, social workers, and others. Your thoughts?
March 07, 2011
Drew Rosielle MD said...
Lisa thanks for the history of the phrase - yes it makes sense as a short-cut way of talking with other clinicians/health professionals/hospital administrators, but not families.
I've said on the blog before, and won't pass up this opportunity again, that I think we suffer as a community due to lack of any sort of accurate, non-euphemistic (you start throwing around 'quality of life' and people start thinking about support groups and wigs for cancer survivors...not that there's anything wrong with that), and very succinct (one sentence) way of describing to lay people what we do in palliative care. And in a way that wouldn't lead my mother to respond 'Isn't that what all doctors do?'
Christian, you didn't exactly say this, but I wonder if you are concerned the phrase stigmatizes hospice. While we need to, absolutely de-link ourselves from being connected solely to EOL care, it's also true that hospice care, as a whole, provides immaculate care which promotes quality of life, alleviates suffering, supports patients & families emotionally, and is aligned with care goals (usually, b/c if it wasn't then they'd likely not be in hospice). The only problem, you know, is that hospice is, b/c Medicare made it so, for people at life's end. It's like 'we're not for dying people - hospice is - not that there's anything wrong with that.'
Anyway, despite my longing for a non-euphemistic sentence I have found that, at the bed side, you can usually help people understand in a few sentences, tailored to what the consult reason is, and that from a practical standpoint I have a MUCH more difficult time helping patients understand the difference between an hospital-based palliative consult service which also runs clinics and home based palliative care programs. Eats up a lot of time at times.
I'll also say that I usually tell patients I see as a consultant, straight up, b/c I figure many of them are worried about it, that we do take care of a lot of people who are dying, make sure they're comfortable and in the place they want to be, help them figure out when it's time for hospice care, etc., and that's a role we play in the institution, although that's not why Dr. XYZ asked us to see you today. I may be oblivious to the effects of this, but I haven't noticed any major problems, and even for patients who completely aren't ready to 'go there,' I've signalled to them, from the beginning, that we're a team who is comfortable going there and it's a safe topic in our presence. I think it helps down the road, and half the time anyway patients are so terrified of this, to have the door opened to talk about it, in a safe and less threatening manner (ie framed as this is something our team does for some patients so we can talk about it hypothetically here, not this is something that your pulmonologist thought was so urgent that she wanted us to talk with you, NOW, about your death), allows them to begin to discuss what they worry the most about. So, for the most part, I think it helps us to foreground, a little, our expertise and confidence in providing excellent EOL care, not hide from it. Of course these are already patients who have agreed to see us, referred to us by people who understand what we do....
March 07, 2011
Earl Quijada said...
I’m not a fan of the phrase “non-hospice palliative care”. I first heard it used at AAHPM 2010 Boston by Diane Meier in context of “improving optics” on Capitol Hill as anything with “death”, “end of life” etc...immediately produces a lightening rod for controversy. I don’t remember the phrase being discussed in context of describing palliative care to colleagues or patients and families. I don’t imagine that if “non-hospice palliative care” were used that it would be contained in whatever intended silo. So that said, it will get to the patient and it does stigmatize hospice. In my opinion, it minimizes what we do best, end of life care. I don’t think Balfour Mount coined palliative care to “cloak” the death part.
That being said, of course I don’t think we should be passing out death cards. Our expertise lies in knowing how to handle this part of life in the context of each individual’s narrative. I don’t think there is a non-euphemistic phrase to describe what we do. Do we clinically need one and do all specialties have one? I don’t think we need one clinically and if we’re trying to create a phrase for someone other than patients/families it’s almost as if we’re trying to justify something.
If we were to use a phrase, I prefer something morally neutral like Advance Illness Management (AIM) that Brad Stuart uses. Phrases with “quality”, “relieve suffering”, and even “matching preferences” to me can sometimes create a tone that we’re doing something that someone ought to be doing but isn’t (bad bad).
Tuesday, March 8, 2011
More Palliative Care Could Save Hospitals, Medicaid Millions: Study
More Palliative Care Could Save Hospitals, Medicaid Millions: Study
WNYC Radio
Tuesday, March 08, 2011
By Fred Mogul
Dr. Sean Morrison said bringing together doctors, nurses, chaplains and social workers to talk through treatment options with patients and their families makes sense not only for the patient with end-stage pancreatic cancer but also for the one in the early stages of a relatively curable leukemia.
And now, Dr. Morrison said, data suggests not only improved outcomes for patients, but potentially thousands of dollars' worth of savings per hospital visit and tens or hundreds of millions of dollars' worth of potential savings state-wide.
His study in the journal Health Affairs compared the treatment of hundreds of patients at four hospitals across New York State. The main savings come from shortening hospital stays and keeping people out of the Intensive Care Units.
"What we found is that when patients received palliative care plus usual care, it resulted in somewhere between $4,000 and $7,500 per admission to the hospital," said Morrison, an internist, geriatrician and palliative care specialist at Mt. Sinai Medical Center.
He estimated that could save the New York Medicaid program up to $250 million, if applied to all hospitals with 150 beds or more.
Morrison said about 80 percent of hospitals already have palliative care teams, but that doesn’t mean widespread savings would be easy to come by because there’s a wide variation in how effective these teams are.
He also said there's much resistance to expanding palliative care because hospitals can’t always bill Medicaid or insurers for it, and many doctors associate it with giving up on patients.
I posted this comment:
Dr. Morrison is right about palliative care’s benefits to patients, families and hospitals. Simply put, palliative care matches patient wishes to treatment goals, and reduces suffering. Palliative care may be right for someone who suffers from pain or other symptoms due to a serious illness such as cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer’s, AIDS, Amyotrophic Lateral Sclerosis (ALS) and multiple sclerosis. Palliative care can be provided at any stage of illness and along with treatment meant to cure. Good information sites for the general public are getpalliativecare.org and healthcarechaplaincy.org and for health care professionals capc.org.
http://bit.ly/fyb43W
WNYC Radio
Tuesday, March 08, 2011
By Fred Mogul
Dr. Sean Morrison said bringing together doctors, nurses, chaplains and social workers to talk through treatment options with patients and their families makes sense not only for the patient with end-stage pancreatic cancer but also for the one in the early stages of a relatively curable leukemia.
And now, Dr. Morrison said, data suggests not only improved outcomes for patients, but potentially thousands of dollars' worth of savings per hospital visit and tens or hundreds of millions of dollars' worth of potential savings state-wide.
His study in the journal Health Affairs compared the treatment of hundreds of patients at four hospitals across New York State. The main savings come from shortening hospital stays and keeping people out of the Intensive Care Units.
"What we found is that when patients received palliative care plus usual care, it resulted in somewhere between $4,000 and $7,500 per admission to the hospital," said Morrison, an internist, geriatrician and palliative care specialist at Mt. Sinai Medical Center.
He estimated that could save the New York Medicaid program up to $250 million, if applied to all hospitals with 150 beds or more.
Morrison said about 80 percent of hospitals already have palliative care teams, but that doesn’t mean widespread savings would be easy to come by because there’s a wide variation in how effective these teams are.
He also said there's much resistance to expanding palliative care because hospitals can’t always bill Medicaid or insurers for it, and many doctors associate it with giving up on patients.
I posted this comment:
Dr. Morrison is right about palliative care’s benefits to patients, families and hospitals. Simply put, palliative care matches patient wishes to treatment goals, and reduces suffering. Palliative care may be right for someone who suffers from pain or other symptoms due to a serious illness such as cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer’s, AIDS, Amyotrophic Lateral Sclerosis (ALS) and multiple sclerosis. Palliative care can be provided at any stage of illness and along with treatment meant to cure. Good information sites for the general public are getpalliativecare.org and healthcarechaplaincy.org and for health care professionals capc.org.
http://bit.ly/fyb43W
Friday, March 4, 2011
The truth about end-of-life planning
From The Huffington Post: http://huff.to/gyMTtA
Joseph Nowinski, Ph.D..Clinical psychologist; coauthor, 'Saying Goodbye: How Families Can Find Renewal through Loss'
Posted: March 3, 2011
Congress is debating the merits of the Affordable Care Act, and the usual suspects are leading the charge against it. They've already scored one victory. A few weeks ago, the news broke that the Obama administration was prepared to move ahead with the "end-of-life planning" provision of the Affordable Care Act, both of which have been the target of so much misinformation. Shortly thereafter, it was announced that end-of-life planning would not be authorized after all. It seems that this humane practice has fallen victim to yet another slanderous salvo. How did this happen?
First of all, it's vital that people understand exactly what end-of-life planning is, and what it is not. In an effort that would undermine badly needed health care reform in this country, demagogues like Sarah Palin created a fantasy called "death panels" and insinuated that health care reform would result in some government agency deciding when to "pull the plug" on terminally ill Americans. This tactic, outrageous as it was, did succeed, in that it scared many people and turned them against health care reform. It also reveals, however, how little many people understand about our health care system as well as how impotent they feel in the face of it. No populace that felt empowered about their health care system could possibly be stampeded in this way.
So what is end-of-life planning? It is, for one thing, not a death panel. On the contrary, the health care system that has existed in America prior to health care reform could be said to have been dominated by the equivalent of "death panels." They take the form of millions of denials, exclusions and outrageous premium increases that Americans with serious or terminal illnesses have received each and every year when they turned to their health insurers expecting help. I know of no one who does not know someone who has been the victim of such practices. In fact, in a survey just released by the Department of Health and Human Services, as many as half of Americans under the age of 65 have medical conditions that qualify them to either be denied coverage or else subjected to prohibitively high premiums. Naturally, the insurance industry insists that this number is inflated. But what if it is only a third of Americans? No matter what the percentages, do these practices not amount to de facto death panels? After all, where is one to turn if you are diagnosed with a terminal illness and then denied coverage or asked to pay a premium you can't possibly afford?
What end-of-life planning is, in the context of the Affordable Care Act, is for a patient with a terminal diagnosis to be able to meet with his or her primary care physician once a year to review the overall treatment program, consider various options and make rational decisions. There is no reason why close family members cannot be part of this process.
Not every man or woman who is facing impending death is open to end-of-life planning. Many individuals have shared with us their frustration in this regard -- often with unfortunate results. As an example, consider the woman whose father, suffering from severe dementia as well as kidney failure requiring dialysis, underwent cardiac bypass surgery. He died a week later from an infection of unknown origin. Why did this happen? Because, the daughter explained, her father had stubbornly refused to discuss such end-of-life decisions. "He didn't even know who I was," this woman said, "but I said yes to the surgery because the doctors wanted to do it and I didn't know what he would want." Such reports only serve to underscore the fact that there are many decisions that the terminally ill are well advised to make (preferably in consultation with loved ones) while they are lucid and capable of making them. Too many people die every year in hospitals and intensive care units simply because they did not have an opportunity to consider alternatives such as hospice or home care combined with palliative care, as opposed to heroic interventions when the chances for improvement are nil. Resources for end-of-life planning can be found on www.NewGrief.com.
Contrast the above scenario with recent research which shows that making palliative care available to the terminally ill -- including pain management, along with regular opportunities to talk with counselors and doctors -- results in patients reporting less depression, improved energy levels and a better quality of life in general. Hardly the image of a death panel.
Those of us who would prefer to offer the above alternative to Americans who are battling terminal illness need to stand up in any way we can in order to challenge misinformation and advocate for the humanity of end-of-life planning. We need to say it, loudly, clearly and often: The Affordable Care Act includes no death panels! There will be no death panels in America!
Joseph Nowinski, Ph.D..Clinical psychologist; coauthor, 'Saying Goodbye: How Families Can Find Renewal through Loss'
Posted: March 3, 2011
Congress is debating the merits of the Affordable Care Act, and the usual suspects are leading the charge against it. They've already scored one victory. A few weeks ago, the news broke that the Obama administration was prepared to move ahead with the "end-of-life planning" provision of the Affordable Care Act, both of which have been the target of so much misinformation. Shortly thereafter, it was announced that end-of-life planning would not be authorized after all. It seems that this humane practice has fallen victim to yet another slanderous salvo. How did this happen?
First of all, it's vital that people understand exactly what end-of-life planning is, and what it is not. In an effort that would undermine badly needed health care reform in this country, demagogues like Sarah Palin created a fantasy called "death panels" and insinuated that health care reform would result in some government agency deciding when to "pull the plug" on terminally ill Americans. This tactic, outrageous as it was, did succeed, in that it scared many people and turned them against health care reform. It also reveals, however, how little many people understand about our health care system as well as how impotent they feel in the face of it. No populace that felt empowered about their health care system could possibly be stampeded in this way.
So what is end-of-life planning? It is, for one thing, not a death panel. On the contrary, the health care system that has existed in America prior to health care reform could be said to have been dominated by the equivalent of "death panels." They take the form of millions of denials, exclusions and outrageous premium increases that Americans with serious or terminal illnesses have received each and every year when they turned to their health insurers expecting help. I know of no one who does not know someone who has been the victim of such practices. In fact, in a survey just released by the Department of Health and Human Services, as many as half of Americans under the age of 65 have medical conditions that qualify them to either be denied coverage or else subjected to prohibitively high premiums. Naturally, the insurance industry insists that this number is inflated. But what if it is only a third of Americans? No matter what the percentages, do these practices not amount to de facto death panels? After all, where is one to turn if you are diagnosed with a terminal illness and then denied coverage or asked to pay a premium you can't possibly afford?
What end-of-life planning is, in the context of the Affordable Care Act, is for a patient with a terminal diagnosis to be able to meet with his or her primary care physician once a year to review the overall treatment program, consider various options and make rational decisions. There is no reason why close family members cannot be part of this process.
Not every man or woman who is facing impending death is open to end-of-life planning. Many individuals have shared with us their frustration in this regard -- often with unfortunate results. As an example, consider the woman whose father, suffering from severe dementia as well as kidney failure requiring dialysis, underwent cardiac bypass surgery. He died a week later from an infection of unknown origin. Why did this happen? Because, the daughter explained, her father had stubbornly refused to discuss such end-of-life decisions. "He didn't even know who I was," this woman said, "but I said yes to the surgery because the doctors wanted to do it and I didn't know what he would want." Such reports only serve to underscore the fact that there are many decisions that the terminally ill are well advised to make (preferably in consultation with loved ones) while they are lucid and capable of making them. Too many people die every year in hospitals and intensive care units simply because they did not have an opportunity to consider alternatives such as hospice or home care combined with palliative care, as opposed to heroic interventions when the chances for improvement are nil. Resources for end-of-life planning can be found on www.NewGrief.com.
Contrast the above scenario with recent research which shows that making palliative care available to the terminally ill -- including pain management, along with regular opportunities to talk with counselors and doctors -- results in patients reporting less depression, improved energy levels and a better quality of life in general. Hardly the image of a death panel.
Those of us who would prefer to offer the above alternative to Americans who are battling terminal illness need to stand up in any way we can in order to challenge misinformation and advocate for the humanity of end-of-life planning. We need to say it, loudly, clearly and often: The Affordable Care Act includes no death panels! There will be no death panels in America!
What Makes Us Unique, What Makes Us Similar
"Our uniqueness is what gives us value and meaning. Yet in the telling of stories we also learn what makes us similar, what connects us all, what helps us transcend the isolation that separates us from each other and from ourselves." -- Dean Ornish, MD
Thursday, March 3, 2011
About the power of laughter
“The ultimate weapon,” he wrote, “in the face of evil or sorrow, sadness or death, is not stoic virtue and the stiff upper lip but laughter, for where laughter is, God cannot be far away.”
-- The Rev. Peter Gomes
-- The Rev. Peter Gomes
Something so true about everyone that I read just this morning
"That every one of us matters. And that we have the power to befriend and strengthen the life in one another to change the world, one heart at a time." -- from the preface to the book "Kitchen Table Wisdom" by Rachel Naomi Remen, MD.
Wednesday, March 2, 2011
Tribute to the Rev. Peter J. Gomes
The Rev. Peter J. Gomes, a Harvard minister, theologian and author died recently at age 68. He was a highly visible presence on campus whose reach was much wider.
I found his writings instructive and inspirational to me, who is not a Christian.
Yesterday’s New York Times obituary (http://ping.fm/w2SpK) reminded me of that:
In his 1996 best seller, “The Good Book: Reading the Bible with Mind and Heart,” Mr. Gomes urged believers to grasp the spirit, not the letter, of scriptural passages that he said had been misused to defend racism, anti-Semitism and sexism, and to attack homosexuality and abortion. He offered interpretations that he said transcended the narrow context of modern prejudices.
“The Bible alone is the most dangerous thing I can think of,” he told The Los Angeles Times. “You need an ongoing context and a community of interpretation to keep the Bible current and to keep yourself honest. Forget the thought that the Bible is an absolute pronouncement.”
But Mr. Gomes also defended the Bible from critics on the left who called it corrupt because passages had been used to oppress people. “The Bible isn’t a single book, it isn’t a single historical or philosophical or theological treatise,” he told The Seattle Gay News in 1996. “It has 66 books in it. It is a library.”
In 1991 he announced that he was gay. He then said:
“I now have an unambiguous vocation — a mission — to address the religious causes and roots of homophobia,” he told The Washington Post months later. “I will devote the rest of my life to addressing the ‘religious case’ against gays.”
I never met him. I wish I had.
May his memory be a blessing.
I found his writings instructive and inspirational to me, who is not a Christian.
Yesterday’s New York Times obituary (http://ping.fm/w2SpK) reminded me of that:
In his 1996 best seller, “The Good Book: Reading the Bible with Mind and Heart,” Mr. Gomes urged believers to grasp the spirit, not the letter, of scriptural passages that he said had been misused to defend racism, anti-Semitism and sexism, and to attack homosexuality and abortion. He offered interpretations that he said transcended the narrow context of modern prejudices.
“The Bible alone is the most dangerous thing I can think of,” he told The Los Angeles Times. “You need an ongoing context and a community of interpretation to keep the Bible current and to keep yourself honest. Forget the thought that the Bible is an absolute pronouncement.”
But Mr. Gomes also defended the Bible from critics on the left who called it corrupt because passages had been used to oppress people. “The Bible isn’t a single book, it isn’t a single historical or philosophical or theological treatise,” he told The Seattle Gay News in 1996. “It has 66 books in it. It is a library.”
In 1991 he announced that he was gay. He then said:
“I now have an unambiguous vocation — a mission — to address the religious causes and roots of homophobia,” he told The Washington Post months later. “I will devote the rest of my life to addressing the ‘religious case’ against gays.”
I never met him. I wish I had.
May his memory be a blessing.
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