Category Archives: Medical Crisis

It’s Healthcare Decisions Time! Focus on What You Want, Not on What You Don’t

Happy National Healthcare Decisions Day! Actually, it’s a whole week, starting April 16. The Day was created to remind all of us of the importance of  having a conversation with our family and friends about what kind of care we’d want, if we couldn’t speak for ourselves; and of having a written advance care directive and a health care proxy to speak for us.

And, in honor of the week, my book, “Last Comforts: Notes from the Forefront of Late Life Care,” is now available in all e-book venues – Kindle, Nook, iBooks, Kobo and more  — for the new low, low price of $5.99!

It’s a good week to think about your bucket list, too, which I wrote about in this Sixtyandme.com post.

Personally, I’ve never been a fan of the idea of coming up with a bucket list. At heart, and I’m sure I’m not alone in this, my clear preference is to focus on the less spectacular but just as satisfying smaller pleasures of daily life. And being grateful for the sometimes unexpected joys to be found there.

The photo accompanying this post is a good example of what I mean. I’m sure that seeing the Grand Canyon is probably atop lots of bucket lists. My husband and I were fortunate enough to be able to visit the South Rim a couple of years ago and of course, it was breathtaking. But here was my favorite moment (although the photo doesn’t do it justice). We had emerged from lunch around the same time as a heavy rain had stopped and there – so close you could practically reach out and touch it – was a rainbow. An unexpected, once-in-a-lifetime vision.

But my bucket list skepticism changed before I read about research conducted by the Stanford Letter Project at the Stanford University School of Medicine. As Dr. VJ Periyakoil, founder of the Stanford Letter Project, pointed out in a compelling opinion piece in The New York Times, it’s important not only to write down several things you’d like to accomplish, experience, see or share – and update your list from time to time as your feelings change – but also to share this with your physicians.

Why? Because they need to know what’s important to you if they are going to provide the best possible care for you, the individual.

If you’re having a problem identifying three to five main goals, Stanford has come up with a handy toolkit to help you. So share the list with your doctor. If you have a chronic illness, the toolkit advises, “Ask your doctor what you need to know about your health and illnesses and if they will prevent you from reaching your goals. Especially ask them about if any treatments they are proposing will prevent you from living your life as you wish to.”

Rethinking the bucket list question, I considered another reason why sharing your list with physicians is an excellent idea. The truth is, so much of thinking about advance care planning and preparing advance care directives has to do with what we don’t want. CPR, yes or no? Feeding tubes, yes or no? Mechanical ventilation, yes or no?

The bucket list, on the other hand, is a clear roadmap for our loved ones and physicians to understand what we do want. So it can be a lovely, positive complement to the admittedly sobering and potentially unpleasant work of envisioning our end-of-life care preferences.

 

On the Radical Power of Conversations

 

When you’re sitting and waiting in your doctor’s exam room, are you thinking of yourself as a revolutionary? Victor Montori, MD, wants you to.

Dr. Montori, physician and researcher in the science of patient-centered care at the Mayo Clinic, has spent considerable time addressing other physicians and physician groups about the failings of what he calls “industrial health care.” That it fails to notice patients – in the sense of not listening to patients, not understanding nonmedical events in our lives, not paying attention to what we value most. That it standardizes practices for patients like this, rather than caring for this patient.

But in short, he believes it is time for a patient revolution led not by physicians but by the public. Health care reform – itself no easy feat to accomplish, much less debate – is not enough, he says: “It is time for a patient revolution not only because it has patient care as its goal but also because it believes citizens — healthy people, patients who are not too sick to mobilize – must lead the way.”

If there is a manifesto for this nascent movement, it is Dr. Montori’s book Why We Revolt. The book’s essays describe what is wrong with our health care system, how it has corrupted its mission, how it has stopped caring. It does not get into the weeds of national or state public policies, or explore alternatives to the kind of financial incentives that help perpetuate our current system, but it does propose “a revolution of compassion and solidarity, of unhurried conversations and of careful and kind care.”

A few nuggets from the book:

“If completely successful, care should enable patients to be and do, minimally hindered by illness and treatment.”

“What actions to take depend on the patient situation, the options available and what patients value. For most people, the situation they face is never simply medical.”

Minimally disruptive care focuses on “advancing the human situation of each patient with the smallest possible health care footprint on their lives. It calls for patients and clinicians to shape care to respond well to each patient’s situation in a manner designed to fit easily within chaotic lives.”

“Shared decision making is an empathic conversation by which patient and clinician think, talk and feel through the situation and test evidence-based options against the patient’s situation. [It] is a human expression of care.”

“Care is a fundamentally human act, one that manifests in the dancing art of conversations…A revolution of patient care must harness the power of conversations.”

In 2016, Dr. Montori founded The Patient Revolution, a nonprofit organization whose mission is “to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.”

The Patient Revolution is a multidisciplinary team of collaborators with backgrounds in clinical practice, clinical research, design, health policy, and storytelling. The team, which has spent more than 10 years developing tools and programs to help patients and doctors communicate better, have done extensive work in shared decision making and minimally disruptive medicine.

I spoke with Maggie Breslin, director of the organization, who was also part of that team at the Mayo Clinic. She said that the Patient Revolution’s aim “is for patients, caregivers and communities to drive change. It feels like what health care is supposed to be about.”

The team’s focus right now is on reaching out to individuals at the community level. Currently they are partnering with communities in Minnesota, to co-develop issues around health care access. “It’s still early days,” she noted.

Useful Communication Tools

It’s said that political campaigns are conducted in poetry, while governance is conducted in prose. The same might be applied to the Patient Revolution. While Dr. Montori may have the soul of a poet, the organization’s website offers very practical prose guidance to help us navigate our conversations with our physicians.

For example, here are five questions they encourage you to think about, write responses to and practice how you’ll ask them:

I want to talk about…

It is important to me because…

It might help you to know…

I want this conversation to lead to…

I’m nervous this conversation will lead to…

Also useful are tools to help you frame that conversation with your doctor by talking about your life and your values. For example:

What is one nonmedical thing about your life that you think the doctor should know?

What is one thing your doctor is asking you to do for your health that is helping you feel better?

What is one thing your doctor is asking you to do for your health that feels like a burden or feels harder than it should?

Where do you find the most joy in your life?

As the late poet, feminist and civil rights activist Audre Lorde wrote, revolution is not a one-time event. But if you’re starting to feel more like a health care revolutionary now, and you want to find ways to advance the movement in your community, you can find ways to get involved at http://patientrevolution.org. You can also order Dr. Montori’s book there.

 

 

Scary Things: Ghouls, Goblins…& Life Support

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!

What the Health Care Debate Didn’t Debate

debate2-17

 

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.

 

6 Steps To Take for Better End-of-Life Care

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

A Necessary Look at the End of Life in an ICU

extremispic

They say a picture is worth a thousand words. But that phrase was probably invented before the advent of film and video. Recently I watched a remarkable 24-minute short film, “Extremis” (available now on Netflix) and I can tell you unequivocally that it is worth many, many thousands of words.

Set in the intensive care unit at Highland Hospital in Oakland, California, it is an unflinching view of dying. More precisely, it shows how the technology that can prolong our lives when we are desperately ill raises important questions about the difficulties in making decisions at the end of life, not only for the ill but also for those who love them and face the agony of impending loss.

It’s a relatively short film, but very powerful. I would liken its brevity to the short stories of Alice Munro, who can tell you more about the human condition in 25 pages than most novelists can. The film is the result of a fortuitous collaboration between Dr. Jessica Nutik Zitter, an ICU physician and palliative care specialist who’d thought about the potential impact of a film project ever since she had watched the 2012 documentary “The Waiting Room,” filmed at Highland Hospital; the film director Dan Krauss, who was not initially drawn to the subject of end-of-life issues but ultimately found the ICU to be a “truly fascinating world where science and faith intersect,” as he told Modern Healthcare;” and Highland Hospital. Filming took months. It won Best Short Documentary awards this year from the Tribeca and San Francisco International Film Festivals.

“Extremis” mainly follows the wrenching struggles of two families. We meet Donna, in the end stages of a form of muscular dystrophy and on a ventilator, her husband and daughter with her; and Selena, unresponsive after she had stopped breathing in the car on the way to the ER, now on a ventilator too after spending up to 26 minutes without oxygen. We meet her daughter and her brothers, too, each of whom has different beliefs about how to proceed. That these families allowed filmmakers to record them throughout their ordeals is truly remarkable – and a public service.

“We’re all gonna die…and it’s good to have a little bit of a say in how,” Dr. Zitter remarks at one point in the film. (Her upcoming book—Extreme Measures: Finding a Better Path to the End of Life— is due out in February.)

How do we express our own wishes? In the past several years, much has been written about the importance of signing an advance care directive; with it, if you face a medical crisis and cannot speak for yourself, the person you’ve chosen to speak for you would be guided by your wishes and values. And yet, only a small percentage of adults in the U.S. have actually done this.
That shouldn’t be surprising; how many of us really want to think long and hard about our own mortality? And how many of us can really envision what it might be like to live on thanks to the many mechanical inventions available to us?

Watch this film. You’ll have the clearest view I’ve seen of their reality. Moreover, you’ll see that in the absence of a directive, those closest to you will have the enormous and sometimes guilt-laden burden of making decisions for you, adding to the emotional turmoil that attends the end of life even in the best of circumstances. You’ll also see that decision-making can present moral and ethical dilemmas for the physicians treating you.

You can find advance directive forms for each state at Caring Connections, a program of the National Hospice and Palliative Care Organization, here.