Palliative care. Like hospice, the interdisciplinary approach of palliative care focuses on providing comfort for seriously ill patients, regardless of age. Unlike hospice, comfort care is not limited to those with a terminal diagnosis and can be offered at the same time as a patient is pursuing curative treatment.
Had a wide-ranging conversation about how the media portrays (or doesn’t) elders, serious illness; how people misunderstand palliative and hospice care; and lots more on Barry Lynn’s “Culture Shocks” podcast.
You can listen to our half-hour conversation in the second half of the podcast.
Hawaii has become the latest state to enable medical aid-in-dying, and public opinion has been shifting more in favor of it in the past couple of years. It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it. I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.
Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.
In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.
You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/
Here’s my early Valentine’s Day gift to you! It’s a chance to win a FREE Kindle version of my book, “Last Comforts: Notes from the Forefront of Late Life Care.”
Enter before Feb. 14 and you could be among the 20 winners of this award-winning book about educating ourselves and our loved ones about the best possible care in our later years, to avoid medical crises down the road. It’s a book with a lot of heart and a lot of practical guidance, too!
The giveaway will only last from Feb. 1 to Feb. 14, so enter now. And if you already have the book, be sure to tell your friends!
Here’s the link: https://www.goodreads.com/giveaway/show/276947-last-comforts-notes-from-the-forefront-of-late-life-care
Happy Halloween, boys and ghouls! We’re surrounded by all things spooky and macabre right now, so it seems like a good time to ask: what scares you?
Truth be told, I found these creepy creatures shown here pretty scary when I saw them at the otherwise great Portland Art Museum in Oregon. Something about their fierceness and intent. But I’ll tell you what scares me more. It’s the idea of living-but-not-living; that is, having to rely on a ventilator, and artificial feeding, to keep me among the “living” if I’m otherwise close to dying. Like being in suspended animation.
It’s one thing to consider life-prolonging treatments in the abstract; even checking the boxes on an advance care directive or a POLST form can seem like an abstract exercise too. But an outstanding article by Sara Manning Peskin, MD, recently brought home to me once again the grim specifics of these treatments and tore away anything abstract in considering them.
Why is it so important to understand this on a gut level, rather than as a cerebral exercise? Over the past year, I’ve had the opportunity to speak to a number of groups about advance care planning. What I’ve come to realize, though, is that for many people, it’s hard to think about what they might want, or not want, because they don’t understand the realities of what’s involved with various life-prolonging treatments. So I try to explain some of the highlights, with the important caveat that I’m not a doctor or an advanced practice nurse. Even so, I’m sure for many these are still abstract ideas.
That’s where Dr. Peskin’s article comes in. She writes about meeting a 56-year-old woman she calls Geraldine, and her family, in the hospital three weeks after Geraldine had suffered a heart attack. Geraldine was on a breathing tube.
“We can place a long-term breathing tube in her neck and a feeding tube in her stomach,” she told the family, “but there are no cases in the medical literature of someone like her living independently again. The best we could hope for is a life of near-complete dependence.”
Her family decided that, because Geraldine was stubborn and exceptional in life – a fighter, they called her — they believed she would be exceptional in beating her prognosis too.
“For Geraldine’s family, the immediate fear of watching her die outweighed the unfamiliar pain of sustaining her on machines and watching her disappear in a long-term care facility,” Dr. Peskin writes. And so the breathing tube was placed in her neck, and the feeding tube in her stomach.
But, as Dr. Peskin explains, “immobility leads to complications: infection, blood clots and bedsores. Where tubes are inserted, bacteria can enter. Being immobile also put Geraldine at risk for pneumonia and urinary tract infections. “Like mosquitoes in standing water, infections proliferate when the body is still,” Dr. Peskin points out.
Blood clots resulted not only from immobility but also from Geraldine’s body having been inflamed and torn from the heart attack. Circulation slowed. “Pools of static blood dried into a thick paste in her blood vessels,” the doctor says.
A bedsore developed. As Dr. Peskin explains, if a bedsore progresses, first the skin becomes red, then its outer layer breaks down, then the inner layer does. Then, bone, muscles and tendons are exposed. This can happen in a matter of days.
But two months after the heart attack, Geraldine was stable enough to leave the hospital’s ICU and was transferred to a long-term care facility. She was in a persistent vegetative state, which means she did not respond to external stimuli.
The family still hoped that there would be a miraculous turnaround. But there wasn’t any miracle. Geraldine died of sepsis, a life-threatening complication of an infection, after four months of care.
You can read the full article here:
A coda to the story: While Geraldine was still in the ICU, Dr. Peskin reports, another doctor asked if the family of another patient in that ICU could visit Geraldine to see what prolonged dying looked like. The family agreed; the visiting family subsequently chose hospice care for their loved one.
When you think about advance care planning, then, think about Geraldine. I think it’s also helpful to think not only about what you don’t want, but what you do want. It’s still an exercise, to be sure, because so often we truly do not control our end-of-life circumstances. But it’s good to have an ideal in mind.
(In case you’re wondering, those spooky creatures pictured here are Tupilak figures exhibited at the Portland Art Museum in Oregon. These were credited to an Inuit artist, circa 1960. In Greenlandic Inuit culture, these figures were made by shamans to be avenging monsters. They’d be placed into the sea to seek and destroy a specific enemy.)
Happy Halloween!
Recently I had a chance to see how the human heart and spirit can overrule the rational mind, even in hypothetical circumstances. At a local educational event on palliative and hospice care, a woman in her 80s in the audience was attentive and engaged during the presentation. During the discussion that followed the presentation, she talked about how she wanted to look into becoming an organ donor.
But then, she asked the experts if her heart stopped and if she had decided to opt for CPR but it didn’t work, “Can’t there be a miracle?” In other words, before being pronounced dead, couldn’t there be some other way to revive her and enable her to live on? And would she be pronounced dead before her miracle kicked in?
We all want miracles, do we not? We want to have hope when all evidence points to the contrary. That’s why I found her question so poignant, so human. This woman, who had at first seemed to be a realist regarding the question of mortality – accepting it on an intellectual level – was at the same time wandering in the realm of magical thinking.
We’re all susceptible, truth be told. But there are a few things to keep in mind to avoid wandering into this realm ourselves.
I blogged about it for the website sixtyandme.com, and you can read it here:
Wishing you all a wonderful start to summer, this coming weekend!
If you were hoping that a 90-minute debate about the health care system would shed some light on what the Federal government could/should/shouldn’t address, going forward, you were in for serious disappointment.
On Feb. 7, CNN aired that debate between Sen. Bernie Sanders and Sen. Ted Cruz. It really wasn’t about health care, as much as it was about health insurance. More specifically, it rehashed many of the tired and largely superficial arguments — on both sides — that we’d heard about Obamacare during the 2016 campaign. The one issue Sens. Sanders and Cruz seemed to agree about was that drug costs are too high.
If you don’t want to watch the debate for yourself on demand, or read the full transcript (although I’d recommend it), I will sum it up for you: Sen. Sanders believes that health care is a right; that we pay more for health care in the U.S. than other countries and get far less; that drug company executives earn obscenely high salaries; and that there should be Medicare for all. Sen. Cruz believes that government should not be in control of our health care, that it should not get between us and our doctors; that we shouldn’t have rationing the way they do in Europe and Canada; that people should be able to buy health insurance across state lines; and that competition will solve our problems.
What they didn’t talk about were some of the fundamental reasons why our health care system is so stressed. Just a few in the realm of elder care: the cost of treatment and caring for people with multiple chronic conditions; the high cost (and reasons behind) hospital readmissions; the challenge of improving care for people in rural areas; the coming wave of aging baby boomers in need of care; the challenge of providing care for people with Alzheimer’s and other dementias; the high cost of surgeries and other treatments for the ill in their last two years of life; the cascade of issues for those in intensive care units (ICUs) through the end of life.
Nor did they discuss the possible consequences of doing away with some of the more promising demonstration projects by the Centers for Medicare and Medicaid Services (CMS)’ Innovation Center – authorized by the Affordable Care Act – designed to improve the quality of health care (and containing costs). The two I’d keep an eye on: Independence at Home; and Care Choices.
The CNN debate featured a number of real people from various parts of the country and various walks of life, with pressing health care dilemmas and questions for the Senators. You may not be surprised to learn that neither Senator answered those questions directly, but rather treated them as jumping-off points to return to their main messages.
One particular exchange that was disheartening to me (and it was not the focus of a broader discussion, by any means), happened about one-third of the way into the debate. In his advocating against rationing and in favor of people “exercising free choice,” Sen. Cruz had this to say:
“We could cut costs here if we do like Europe and cut the number of MRIs, the number of mammograms. If we cut — you know, you look at the elderly in much of Europe. The elderly here, when the elderly face life-threatening diseases, they’re often treated in the intensive care unit. In Europe, they’re often put in palliative care, essentially doped up with some drugs, and said, ‘Well, now is your time to go.’”
(To which Sen. Sanders’ response, in total, was “Oh.”)
Let’s take Sen. Cruz’ colossal misunderstanding, or mischaracterizing, of what palliative care is all about. First, it is all about patient-centered care. That is, it’s about figuring out what’s important to a patient facing serious illness – in simple terms, what does a good day look like to that person? — and helping him or her achieve it. Second, it does that through symptom management, which means alleviating pain, be it physical, emotional or spiritual. Third, it does not interfere with curative treatment the patient might be receiving from other physicians. Fourth, it is appropriate for anyone, of any age, struggling with a serious illness, not necessarily one that is life-limiting.
But what about his statement about the intensive care unit? He seemed to be saying that this is a beneficial thing for the elderly facing life-threatening diseases. The reality is that for a frail elder at the close of life, an ICU stay can seem more like an assault than a medical miracle. (If our lawmakers doubt that, I’d advise that they watch the short documentary film Extremis.
We may not see much clarity about health care emanating from Washington any time soon. Now that we have a new head of Health and Human Services, will that hasten Obamacare being replaced? Will it be replaced or repaired this year or next year? In what form? Who knows? If this debate was any indication, it doesn’t seem likely that the quality of the discussion about it is going to be terribly enlightening.
I was honored recently to be asked by the Berkeley, California-based Greater Good Science Center to do an essay, based on my experiences as a hospice volunteer and reporting/researching my book. Here are the highlights:
* Educate yourself about the different key treatments for end-of-life care, so that you can make informed decisions.
* Start conversations with loved ones so that they are clear about your wishes for care.
* Understand the benefits of palliative care and hospice care and know when to ask for them.
* Learn how to communicate effectively with doctors and medical staff.
* Research nursing and assisted living facilities in your community, in case you need them.
* Advocate for better end-of-life care for everyone.
You can read the full essay here
Sometimes Andy Lazris is not popular with the adult children of the very old people he sees in his practice as an internist and geriatrician as well as in his role as medical director at assisted living and skilled nursing facilities. Why? Because his is a “less is more” approach to care for elders who typically live with multiple chronic conditions. He believes in fewer diagnostic tests, less clinging to the orthodoxy of “ideal” numbers gauging, for example, glucose, blood pressure and cholesterol. His focus is on helping his patients live a better life, and he favors better nutrition, more physical activity and social engagement. He also has a deep appreciation of the fact that aging, decline – mortality itself — are inevitable facts of life.
That approach is hard for caregivers to accept sometimes, particularly when we are all bombarded by news or advertisements for near miraculous results offered by new drugs and leading-edge treatments and surgical procedures. So off they may go to medical specialists whose approach may be wholly different, but not necessarily better and often far worse in terms of the elder’s quality of life.
Ironically, Medicare is at the heart of the disconnect between the kind of care elders mostly want and what they get – over-testing, over-treatment and over-medication. In its pursuit of quality and thoroughness in elder care, Dr. Lazris says, Medicare rewards aggressive measures by paying for tests, treatments and procedures.
Dr. Lazris explores the many implications of Medicare policies in a new book, “Curing Medicare,” to be published this May by Cornell University Press. Through stories about patients and his own challenges in dealing with the health care system, he shows how these policies often achieve the precise opposite of what they were intended to do.
My own view is that as baby boomers age over the next decade or two, Medicare policies dealing specifically with palliative and hospice care will need a radical overhaul. So I was glad to have had the opportunity to talk recently with Dr. Lazris about his book. His aim is to educate the patients and family members who are keenly interested in how our health system works.
He is hoping that readers will use the information to foster conversations with their doctors. He doubts that this will help fix the health care system, but, he said, “Do it on a small scale. Advocate for yourself, on an individual level.”
An outstanding discussion in the book addresses the differences between “absolute risk” and “relative risk” in assessing various treatment options, a subject Dr. Lazris told me he talks “incessantly” about in public speaking engagements. In 2007, Erik Rifkin, PhD, and Edward J. Bouwer, PhD, wrote a book called “The Illusion of Certainty: Health Benefits and Risks,” in which they present the elegant “Risk Characterization Theater,” a graphic of a hypothetical 1,000-seat theater, to explain the difference between absolute and relative risk. You can learn about it here. The graphic reprises its role in “Curing Medicare.”
Misunderstanding the difference between the two helps to explain the tremendous overuse, in Dr. Lazris’ view, of the blood-thinning drug Coumadin, for example. And in a recent blog post, Dr. Lazris applied the Risk Characterization Theater” to analyze recent findings about the potential risks of proton pump inhibitors – drugs like Prilosec – related to chronic kidney disease.
Published studies, he said, are all about relative risk; adding that physicians don’t know enough about that. But when he explains it to patients even in their nineties, they are “quite sophisticated in figuring things out.”
What would Medicare reform look like to Dr. Lazris? It would “put power in the hands of well informed patients who can control the course of their care.” In short, it would promote individualized care based on patient preference and provide medical interventions shown to be beneficial to the individuals being treated. It would be cost effective. It would give patients choices to maximize patient satisfaction, as well as enhance the doctor-patient relationship.
The bottom line, he writes, is that “the focus of care is to help patients live a better life.”
If your appetite for not-so-arcane medical information has been whetted, visit http://www.thennt.com/home-nnt. NNT stands for “number needed to treat” patients to result in a benefit to one person. A group of physicians have developed a framework and rating system to evaluate therapies based on their patient-important benefits and harms as well as a system to evaluate diagnostics by patient sign, symptom, lab test or study. A lot of this is technical, of course, but the colors used are not: Green indicates that the benefits outweigh the harms, while Yellow indicates that benefits are unclear. Red indicates no benefits and Black indicates that harms outweigh the benefits.
To learn more about over-treatment, visit the Lown Institute’s website. It also includes five questions to ask your physician about a recommended test, medication or procedure.
When her children were young, Theresa Brown, RN, made a mid-career change: from English professor at Tufts University to nursing, and chose to specialize in medical oncology. We should all be glad she did, because she has chronicled her experiences – and by extension, illuminated some of the most pressing issues and challenges in our health care system – in two excellent books as well as in personal essays in The New York Times. And she does it with clarity, insight, humor and understated eloquence.
Her voice is important because nursing truly is the heart of care for the ill. No other health professionals spend as much time providing hands-on care for the sick than nurses. Our health care system is increasingly complex, technology-laden and hyper-specialized. So the need for a humanistic perspective from those who are on the front lines has never been more pressing.
I had the great pleasure of interviewing Theresa recently, following her book tour for The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. The book focuses on a day in her life in the oncology ward of a Pittsburgh teaching hospital; she subsequently left that position and currently works as a hospice nurse, visiting people in their homes.
Just a couple of highlights of our conversation:
Theresa told me that she is comfortable in her current role as a home hospice nurse. In fact, she said, one reason she made this switch was that she always likes to learn new things and wanted particularly to learn about how the kind of care provided for patients at home might ultimately be transferred to the hospital setting. Care that offers more dignity and privacy for patients, such as letting patients sleep when they need to; or even wear their own clothes; and making it easier for family, friends and caregivers to visit any time and stay overnight if need be.
“It would be great to go back to a hospital and say, how can we make things better?” she said. “Creating a balance of comfort and quality care.” Even making the decision not to wake people in the middle of the night would be an enormous change, she pointed out.
We also talked about the ideal of the team approach in palliative and hospice care, where physicians and nurses work closely together in an atmosphere of mutual respect. (I’ve interviewed a number of such teams and, like proverbial married couples, they often do finish each other’s sentences.) In a hospital setting, Theresa noted, “communication between physicians and RNs often is not what it should be.”
She’d like to see more inter-professional training focusing on better communications so that “we could view each other as people and understand each other’s roles and responsibilities, and the pressures on each of us.”
There is no doubt in my mind that Theresa will keep learning – and educating us along the way – and that she’ll continue to make a difference in reaching the goal of improving patient care. In the meantime, you can order books, read her columns or join her mailing list at http://www.theresabrownrn.com.
What was the top medical news story in 2015? In November, Medscape (a medical website from WebMD) asked just that of its readers — primary care physicians, specialists and other health professionals – and more than 400 replied. Number one was: a major change in diagnostic codes, known as ICD-10. Not surprising, perhaps, as there are many more new codes for physicians to ponder, and probably much more administrative time required, as a result, to the chagrin of small practice owners. (http://www.medscape.com/viewarticle/855309)
If we’re talking about developments that have the potential to make a big difference for patients in the coming years, though, I’d like to suggest at least two that ought to top the list.
My first “top news” story affects advance care planning. At long last, as of January 2016, you and your doctor will be able to discuss your goals, beliefs, values and fears should you become seriously ill – and Medicare will actually reimburse him or her for doing it. Granted, the reimbursement isn’t huge — $86 for a mere 30-minute discussion and $75 for a follow-up – but maybe it will be enough of an incentive to encourage more physicians to engage in these critical conversations.
These are difficult discussions to engage in, whether you’re talking with family and friends or your physicians. And too many physicians’ communication skills leave something to be desired. But the goal is to make sure that if you become very ill – particularly if you are not able to speak for yourself – your care will reflect your wishes and values.
My second “top news” story was the selection of hospices that will participate in the Medicare Care Choices pilot project, with implementation beginning in January 2016.
The Care Choices pilot will allow certain hospice patients with advanced cancers, chronic obstructive pulmonary disease (COPD), congestive heart failure, or HIV/AIDS to elect hospice care without having to give up curative treatments.
Originally, the Centers for Medicare and Medicaid Services (CMS) was going to pick at least 30 rural and urban Medicare-certified and enrolled hospices to participate. It expected to enroll 30,000 beneficiaries over a three-year period. But because there was so much interest in the pilot, CMS expanded it to more than 140 Medicare-certified hospices and extended the duration of the project from three to five years. It expects to enroll as many as 150,000 eligible Medicare beneficiaries.
Why is this important? Because the idea of forgoing treatment aimed at cure – currently a requirement to enter into hospice care – has discouraged too many patients and their physicians from considering comfort care solely. Ideally, when the pilot is done, there will be useful evidence about whether concurrent care (curative and comfort) improves quality of life and results in fewer hospital readmissions and, possibly, lower Medicare costs.
In my “wishful thinking” category: Maybe in 2016 CMS will announce it is eliminating the six-month prognosis requirement for patients to enroll in hospice care. That would certainly get my vote for top medical news story next year!
Last Comforts 