Tag Archives: palliative care

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.

Advance Care Planning, elder care, Medical Crisis

A Troubling Bill in South Carolina that Would Suppress Medical Guidance

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            It’s dangerous when politicians to enter the room with physicians and patients. That certainly applies to the many punitive and egregious measures states have adopted about reproductive and transgender rights.  But another type of proposed legislation — this one a barely noticed item — caught my interest.

            In short, H.B. 3615, introduced in the South Carolina legislature, would prohibit health care facilities from initiating discussions about “Do Not Resuscitate Orders” with patients and patient family members, with exceptions. At the moment, the bill is in the hands of the House of Representative’s Committee on Medical, Military, Public and Municipal Affairs, which is headed by a Republican legislator.

            What?? If you are in the hospital being treated for a serious illness, or perhaps a life-limiting illness, isn’t it right, moral and in fact legal to learn about and understand all of your options? And if you cannot make decisions for yourself, shouldn’t your family be accorded the same? In short, yes. In fact, if you are on Medicare and have a discussion in your physician’s office about how you feel about Do Not Resuscitate (DNR) and other measures that you can build an advance care plan around, Medicare will compensate your physician for that discussion.

            What on earth would prompt a legislator to introduce such a bill? The question nagged at me until I decided to call Rep. Annie McDaniel in South Carolina to ask her about it.  McDaniel is a Black woman Democrat in a state with a Republican supermajority in both its House of Representatives and its Senate. 

            We talked logistics first. Rep. McDaniel has no idea about whether or not her bill will pass, but she mused that since the majority party is all about pro-life, perhaps it will support this legislation that addresses end of life issues, not just life’s beginnings. 

            When I asked her what prompted her to draft this bill, the answer was less surprising and more nuanced than I had initially thought. It was born of unsatisfying communications in the hospital where her mother was being treated for a serious illness, when it seemed like every few hours, McDaniel said, someone would come in to ask her mother to sign a DNR statement. It seemed cold and insensitive, when what the family really needed to know was how her mother had gotten to the state she was in, the range of treatment options, and what her prognosis was – all communicated by a person with compassion. 

Beyond Just the DNR Question 

            So it wasn’t really about the idea of a DNR in itself; at heart it was about the often poor and fragmented communications too many of us have had to contend with in a hospital setting. Even under the best of circumstances, it’s not unusual to feel confused and powerless, or to struggle to learn how and when to communicate with medical staff in charge with your or your  loved one’s treatment.

Is the answer to that much broader issue a simple ban on discussing DNR orders? No, especially if no one has taken the time to explain what that order means, what resuscitation truly involves, and what other types of interventions might be necessary to sustain a person’s life.

            The bill may or may not pass. I tried to reach Syllest Davis, chair of the South Carolina Committee on Medical, Military, Public and Municipal Affairs, to get her insights, but have not heard back from her. Absent a DNR in place, will lawmakers worry that it will simply cost too much to keep people alive through mechanical means and prove too much of a burden for the health care system, for example? What concerns me more about the bill, though, is the possibility of its taking on a life of its own in the online ether, somehow prompting other states to follow suit. 

If that happens, it will become even more important for us to have had advance care discussions in advance of a possible hospital stay; put our ideas and preferences in writing and absolutely make sure to tell our loved ones what we want and what we don’t want in the event we cannot speak for ourselves. 

This is just one of many health care and medical issues that are sure to vex us in 2025. But in the quiet as 2024 winds down, I want to wish you all a wonderful holiday season and  a happy and healthy new year. 

Advance Care Planning, baby boomers, caregiving, death and dying, elder care, hospice care, Medical Crisis, National Healthcare Decisions Day, patient education

Planning Ahead in the Time of Covid-19

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One way the coronavirus pandemic has upended what we think of as normal life is how we think about mortality.

How? First, while there’s still so much we don’t know about the virus, what’s clear is that it can, with startling rapidity, do fatal damage even to otherwise-healthy people. It might be a matter of just days or weeks between the time a person first experiences symptoms and the time that person becomes critically ill.

Second, the very sick patients in assisted living, skilled nursing facilities, or in hospital intensive care units must bear the burden of illness alone; visits from loved ones are prohibited. That means a loss of the comfort of being together through a harrowing ordeal.

Third, patients on ventilators must be sedated, and are unable to speak to their loved ones. So there’s no way to have any kind of conversations, much less talks about goals of medical care. Nor can nurses or doctors do what palliative care and hospice physicians have always done best, which is to listen to patients about their lives, their hopes and fears, and to assure them with their very presence that the patients are well cared for.

Fourth, because we cannot gather in groups, we cannot depend on the comfort of family and friends and the time-honored rituals of grieving at funerals or memorial services. Much has been written about the concept of complicated grief, and this pandemic will certainly require a whole new chapter.

This is the horrifying reality that we see and read about, day after day. So it seems to me that this National Healthcare Decisions Day takes on more of a sense of immediacy than it may have in the past. That is, now is the time to think about what kind of care we’d want if we could not speak for ourselves; discuss it with family; get it in writing; and designate a health care proxy.

Of course, it is still true that it’s impossible to decide what kind of treatment you’d want, or not want, if you don’t understand what these treatments entail.

Let’s talk about ventilation, as an example. The best article I’ve read about the why’s and how’s of ventilation is one by Daniela Lamas, MD, a critical care physician at Brigham and Women’s Hospital in Boston and I urge you to read it.

Before Covid-19, my advance care plan said “no thanks” to it. But it seems key to saving the lives of some extremely ill Covid-19 patients and I would not refuse it if I had the virus.

What Dr. Lamas does not mention, though, is that typical time on the ventilator has been longer, on average (up to two weeks or even more) for Covid-19 patients than it has been in conventional uses. That in itself can lead to possible lung damage as well as emotional and psychological issues for recovering patients. Nor does she mention the sad fact that being on a ventilator does not guarantee survival. While it’s still too early to say what percentage of Covid-19 patients do survive ventilation, a large study on that, done by the Intensive Care National Audit & Research Centre in London, found that just 33 out of 98 ventilated patients in the U.K were discharged alive.

So there’s plenty to think about on this National Healthcare Decisions Day. But, hey, we’re home, we’ve got some time on our hands. Pour yourself a glass of wine, or something stronger, and talk it over. And if you need a little guidance getting started, here’s a great resource.

Advance Care Planning, baby boomers, culture change, death and dying, elder care, hospice care, palliative care, patient education, Uncategorized

Yea or Nay on Medical Aid in Dying?

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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/

Advance Care Planning, baby boomers, Book Reviews and News, death and dying, elder care, hospice care, long-term care, nursing homes, palliative care, patient education, wellness

An Early Valentine’s Day Gift! A Free Book!

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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

 

Advance Care Planning, death and dying, elder care, Medical Crisis, palliative care

Scary Things: Ghouls, Goblins…& Life Support

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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!

Advance Care Planning, caregiving, death and dying, hospice care, palliative care

Magical Thinking in End-of-Life Issues

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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!

death and dying, elder care, long-term care, Medical Crisis, palliative care

What the Health Care Debate Didn’t Debate

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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.

 

Advance Care Planning, death and dying, elder care, hospice care, Medical Crisis, nursing homes, palliative care

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

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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