Serious illness isn’t just a medical event. It’s all about the family, too. Likewise, hospice volunteers try to ease a family’s burden, not just the patient’s. Wrote about that for KevinMD.com. You can read it here.
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!
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.)
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!
Tomorrow, May 4, I’ll be testifying at a public hearing about the “Needs of Older Adults in Bergen County.” I’ll be talking about innovations that combine at-home health care with nonmedical supports, as well as home care. Here’s a look at my testimony:
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 you find a hero in the unlikeliest of places. This week I came upon an obituary for Dave Schwartz, 63, a long-time Weather Channel meteorologist. He had twice overcome pancreatic cancer 10 years ago, but began his struggle anew with a stomach cancer diagnosis in 2015.
Mr. Schwartz had joined the Weather Channel in 1985, initially as a newsroom assistant at the same time that he was working for the Fulton County Health Department in Georgia. He became an on-camera meteorologist in 1991.
Cancer, like so many serious illnesses, is often enshrouded in silence and secrecy. It would have been understandable had Schwartz decided to simply take the time off that he needed to undergo treatment and then return to work without talking about his absence. Instead, he chose Feb. 4, of this year, World Cancer Day, to address his viewers.
This is some of what he said: “I want to let you know the reason why I have lost 35 pounds in the last five months is that I am being treated for cancer,” he said on camera. “Stomach cancer, of all things, for a foodie.”
The following month, he went public again, via an interview with Bailey Rogers, a communications specialist at the Weather Channel, for the website Medium. Rogers asked about the side effects of cancer and its treatment, most likely expecting to hear about fatigue, pain, discomfort, etc. Instead, Schwartz responded that “In a sense, having cancer and the impact it has on my life has really enriched my life tremendously through strengthening my relationships with people.”
He also talked about how he and his wife had become philosophical about his condition. He went on to say that “None of us is guaranteed tomorrow — we all know that. As far as I’m concerned, whether you have cancer or not we are all in the same boat. None of us really know that we have more time than what we have right now. So I’m no different than anyone else. I have my struggle, I have my cross to bear — other people have their crosses to bear — and let’s hope that we wake up alive tomorrow.”
I found Schwartz’s comments – not to mention the bravery in sharing his struggle publicly – deeply moving. And it made me think about how powerful storytelling is.
We can learn so much from others not only about the nature of some of the more pernicious illnesses that afflict people, but also about how we can confront illness – mortality itself – with something approximating appreciation for the gift of life in the moment and maybe even a hint of grace.
And it also made me think: Wouldn’t it be helpful if more public figures could follow Dave Schwartz’s lead and talk about the struggles they might be experiencing and, along the way, educate us about what treatment and living with illness is all about?
And while we’re at it, wouldn’t it be helpful if these folks could make some news by talking about and signing advance care directives? Maybe talk about how they thought about the prospect of measures like CPR, feeding tubes and intubation and decided, “Nope. Not for me.” And then maybe figure out a way to have it go viral, much as the “ice bucket challenge” did for ALS. That would be pretty heroic, too.
The Aspen Institute Health Strategy Group wants to hear from us, by June 1. Specifically, in advance of its Spotlight Health session in June, it wants to know: what is our big idea about end-of-life care?
Of course I couldn’t resist submitting my own two cents’ worth. Here it is:
From my vantage point as a hospice volunteer, seasoned journalist and author of a just-published book about end-of-life issues, my big idea is that at age 40+, hospice in the U.S. is in the midst of a mid-life crisis and needs a radical transformation. Not in its philosophy or system of care, but in how it is paid for. It’s time to start from scratch and design end-of-life benefits based on people’s needs, not on their prognosis.
Although hospice benefits are continuously being tweaked, their broad outlines have not fundamentally changed since its inception. But the very nature of the end-of-life experience now is far different than it had been in the 1970s, when hospice cared mostly for people with cancer. Hospice was not envisioned to address the needs of the frail elderly living with multiple chronic conditions, or the ravages of dementia, whose disease trajectories are certainly far less predictable – and often more complex — than cancer.
Two of the essential elements of the Medicare hospice benefit have come to haunt us. First, it is based on prognosis, that is, it is available for a limited time – six months if the illness runs its normal course. Second, it requires that a person give up any treatment or care that might be deemed “curative.” The choice is stark: cure or care. Either/or, but not both. Hardly surprising, then, that so many people do not even choose hospice care until it is very late in the course of their illness. Too late, in my view, to benefit fully from what this holistic, interdisciplinary and profoundly compassionate care can offer.
I believe we have come to a “tear down this wall” moment in end-of-life care. Tear down the wall that separates palliative care and hospice care; end the tyranny of the six-month cutoff for eligibility. Tear down the wall that separates people who still want to continue treating their illness from those who can accept a natural death. It’s time to develop a health care policy and payment system that embraces concurrent care without costing taxpayers more than the current system that is fragmented, costly, often dysfunctional and unsustainable.
End-of-life care involves so many intertwined issues that must be addressed. Just a few: better education and training for physicians and nurses; better training and better pay for the home health and personal care aides who are on the front lines of caring for the very ill; coordinated care aimed at helping people live as well as possible and in their homes as long as possible, without hospital readmissions; focusing more on culture change and person-centered care in long-term care settings; and more effective ways of providing dementia care.
But public policy changes would have a huge impact on all these issues. How do we get to a better future? In a June 2015 Health Affairs article about what is ahead for Medicare’s next 50 years, former Senate Majority Leader Tom Daschle defined his prescription for success as: good public policy, superior technology and enlightened leadership. It seems to me that this prescription misses one element, which is public engagement. Transforming hospice care will likely not happen without vocal and insistent advocacy from all of us. So it’s time for my fellow aging baby boomers to tap back into our activist genes and start insisting on the kind of care we are all going to need in the not-so-distant future.
The Aspen Institute Health Strategy Group is part of the Health, Medicine and Society Program at the Aspen Institute. Co-chaired by former US Health and Human Services Secretaries and Governors, Kathleen Sebelius and Tommy Thompson, its 24 members are senior leaders across influential sectors: health, business, media, technology and more.