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Tag: Palliative Care

Does Our Healthcare System Work for the Most Vulnerable Americans?

By DEBORAH AFEZOLLI, CARL-PHILIPPE ROUSSEAU, HELEN FERNANDEZ, ELIZABETH LINDENBERGER

“Why did you choose this field?” Most physicians are asked this question at some point in their early careers. We are geriatrics and palliative medicine physicians, so when that question is posed to us, it is invariably followed by another: “Isn’t your job depressing?”

No, our job is not depressing. We are trained in the care of older adults and those with serious illness, and we find this work very rewarding.  What truly depresses us is how many vulnerable patients died during the pandemic, and how the scourge of COVID-19 revealed the cracks in our health system. Never before in modern times have so many people been affected by serious illness at the same time, nor have so many suffered from the challenges of our dysfunctional health system. Our nation has now witnessed the medical system’s failure to take comprehensive care of its sickest patients.  This is something those in our own field observed long before the pandemic and have been striving to improve.

All of us practicing geriatrics and palliative care have had a loved one who has been challenged by aging, by serious illness, or indeed by the very healthcare system that is supposed to help them. As medical students and residents, we personally confronted these systemic deficiencies and wondered about alternatives for those patients with the most complex needs. We chose fellowships in geriatrics and palliative medicine because we wanted to try and make a difference in the healthcare that is offered to our most vulnerable patients.

During the New York City surge in the spring of 2020, we were front line workers at a major academic medical center. While the global pandemic took us all by surprise, our clinical training and passion for treating vulnerable populations left us feeling capable and ready to serve. Due to the urgent needs of overwhelming numbers of extremely sick patients, our Department was charged with rapidly expanding access to geriatrics and palliative care across our seven hospitals. We were embedded in Emergency Departments (EDs), hospitalist services, and critical care units.  We roamed the hospitals with electronic tablets and held the hands of dying patients, while urgently contacting families to clarify goals of care.  For those who wanted to receive care in the community, we scrambled to set up telehealth visits and coordinate the necessary support. Way too often we could not meet their needs with adequate services, forcing them to visit overwhelmed Emergency Rooms.

While we helped individual patients and eased some of the strain on our hospitals, our system was overwhelmed and mortality numbers continued to steadily rise. Within our hospitals, staff were redeployed to care for the most critically ill in the emergency departments and intensive care units.  In this frantic time, we were fortunate that our hospitals had sufficient medical resources to care for the sickest patients and for the staff.  However, the sub-acute nursing facilities (SNF) and long-term care facilities strained to protect their residents and their employees. Shortages of PPE, staff, space, testing supplies, and funding all contributed to the high mortality numbers we saw in many NYC facilities and across the nation. There were also limited resources allocated to delivering outpatient care in our patients living in the community.  The rapid shift to telehealth was not feasible for many of our older patients, and even when it was possible, the delivery of diagnostic and therapeutic care was limited and suboptimal.

Data now shows that older adults and those with underlying chronic illnesses were disproportionately affected by the COVID-19 pandemic, experiencing higher hospitalization rates as well as higher death rates. Although adults 65 and older account for only 16% of the US population, they represent 80% of COVID-19 deaths. Residents of nursing homes, the frail homebound, and older people of color were the hit the hardest. Thirty-five percent of the deaths in the US from March-May 2020 occurred among nursing home residents and employees. Nationally, over 600,000 nursing home residents were infected with COVID-19 and over 100,000 died from the disease. These data are underestimates and the death toll is likely higher. We cannot explain why older Black Americans were 1.2 times more likely to die than white Americans nor why the odds of dying from COVID were nearly two times higher for persons living in South Dakota as compared to Wyoming or Nebraska. Often, the paid caregivers for these vulnerable patients were themselves vulnerable underpaid women of color who were at higher risk of contracting COVID.

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How Not to Talk to Someone Dying of Cancer

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By ALLEN FRANCES, MD

Screen Shot 2014-10-12 at 6.49.00 PMA friend of mine has been living well with lung cancer for five years — working, running several miles a day, traveling, doing good stuff with his family, and generally enjoying the pleasures of everyday life. He knows the cancer will eventually kill him, but has been making the most of every remaining minute.

Then, a month ago, things suddenly turned dramatically south. Severe shortness of breath, constant coughing, sleeplessness, fatigue, loss of interest, anxiety. My friend figured the jig was finally up — that he was going terminal. We all felt sad in the face of this inevitability. In our different ways, we began the painful process of saying goodbye.

Then things seemed to get even worse. I accompanied my friend to visit his lung doctor — an amiable and thorough man who spent lots of time with us, took a good history, and did many tests.

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When Is It Appropriate to Ignore an Advance Directive? Is It Ever Appropriate to Ignore a Patient?

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By Eric Widera, MD

An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home’s garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.

What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?

In a paper published recently in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:

  1. Is the clinical situation an emergency?
  2. In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens?

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Building a Better Health Care System: End of Life Care – A Case Study

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By John Henning Schumann, MD

She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.

She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.

Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.

My patient was lucky. She’d lived to 94, and had supportive children who were involved in her care. Her son had long ago been designated as power-of-attorney for her health care. This meant officially that his decisions regarding her care were binding. She was not capable of making sound decisions, medical or otherwise.

The patient had been under the care of a geriatrician. His office chart told me that the option of hospice and palliative care had been discussed with the family. They were interested in learning more; the son had agreed that “Do Not Resuscitate” status was appropriate for his mother. Doing chest compressions on a frail 94 year-old is something none of us want to do.

The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”

Elaine (not her real name) is one of our brightest interns. She’s thinking about going into geriatrics. Situations like this are in many ways the most meaningful for doctors. Too often we stress about minutiae at the expense of the big picture; helping guide a family and patient through a period of critical illness is of true service.

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Denying Reality About Bad Prognoses

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By Bob Wachter, MD

The human capacity to deny reality is one of our defining characteristics. Evolutionarily, it has often served us well, inspiring us to press onward against long odds. Without denial, the American settlers might have aborted their westward trek somewhere around Pittsburgh; Steve Jobs might thrown up his hands after the demise of the Lisa; and Martin Luther King’s famous speech might have been entitled, “I Have a Strategic Plan and a Draft Budget.”

Yet when danger or failure is just around the corner, denial can be dysfunctional (see Karl Rove on Fox News), even suicidal (see climate change and Superstorm Sandy).

Healthcare is no exception. Emerging evidence suggests that patients and their surrogates frequently engage in massive denial when it comes to prognosis near the end of life. While understandable – denial is often the way that people remove the “less” from “hopeless” – it can lead to terrible decisions, with bad consequences for both the individual patient and society.

First, there is evidence that individuals charged with making decisions for their loved ones (“surrogate decision-makers”) simply don’t believe that physicians can prognosticate accurately. In a 2009 study, UCSF’s Lucas Zier found that nearly two-thirds of surrogates gave little credence to their physicians’ predictions of futility. Driven by this skepticism, one-in-three would elect continued life-sustaining treatments even after the doctor offered their loved one a less than 1% chance of survival.

In a more recent study by Zier and colleagues, 80 surrogates of critically ill patients were given hypothetical prognostic statements regarding their loved ones. The statements ranged from “he will definitely survive” to “he will definitely not survive,” with 14 statements in between (including some that offered percentages, such as “he has a [10%, or a 50%, or a 90%] chance of survival”). After hearing these statements, surrogates were asked to interpret them and offer their own survival estimates.

When the prognosis was optimistic (“definitely survive” or “90%” survival odds), surrogates’ estimates were in sync with those of the physicians. But when the prognosis was pessimistic (“definitely not survive” or “he has a 5% chance of surviving”), surrogates’ interpretations took a sharp turn toward optimism. For example, surrogates believed that when the doctor offered a 5% survival chance, the patient’s true chance of living was at least three times that; some thought it was as high as 40%. Remarkably, when asked later to explain this discordance, many surrogates struggled. Said one, “I’m not coming up with good words to explain this [trend] because I was not aware I was doing this.” The authors identified two main themes to explain their findings: surrogates’ need to be optimistic in the face of serious illness (either as a coping mechanism for themselves or to buck up their loved one), and surrogates’ beliefs that their loved one possessed attributes unknown to the physician, attributes that would result in better-than-predicted survival (the “he’s a fighter” argument).

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End of the Line in the ICU

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By Kristen McConnell

Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes—the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing—she said that if she were going to have a stroke, she knew which type she would prefer: “I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”

She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death—and their fear of ending up like some of our patients—in regular discussions of plans for DNRtattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”

Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit.

We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke. But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband.

You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth.

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Crossing the Line

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By James Salwitz, MD

Recently a patient with advanced lung cancer was admitted to a local hospital.  Pain in his abdomen was diagnosed as a gallbladder infection.

Because he had metastatic cancer, in addition to the new problem, the patient and family decided that if things deteriorated he should not be given CPR or put on a respirator. A Do Not Resuscitate (DNR) order was entered in his chart. Treatment for the gallbladder was continued, but it was decided that there was a line that the doctors would not cross.

This made sense to me.

Try conventional therapy, but if he was too weak to recover, then do not continue treatment which could cause more suffering than benefit.  Give him the opportunity to survive the gallbladder problem, but respect the terminal nature of the greater disease.  We were all gratified when his pain and fever went away, and he recovered from the emergency.

When we were discharging him from the hospital, a surprising thing occurred.

The patient and family requested that since he had survived the infection, that the DNR be reversed.  They decided that when a sudden new major medical complication occurred, that CPR be performed and he would be placed on a respirator.  The clear protective line vanished.

In difficult lengthy discussions with the patient and family, it became clear that they were riding tides of emotion.  When things looked better, they focused on life and “cure.”  When things grew worse, they were ready to withdraw.  They became defensive and angry at the suggestion that this decision might cause suffering.  We were not able to redefine limits to his care.

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Death Panels Everyone Can Live With

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By DAVID E. WILLIAMS

Chief among Sarah Palin’s assaults on truth and reason is her contention that providing reimbursement for end-of-life planning sessions with a health care provider is tantamount to a “death panel” where a “bureaucrat can decide based on a subjective judgment of [a person’s] ‘level of productivity in society,’ whether they are worthy of health care.”

A Health Affairs article (Palliative Care Consultation Teams Cut Hospital Costs for Medicaid Beneficiaries) makes a far more level-headed and evidence-based contribution to the discussion. The authors studies the use of palliative care teams at four urban hospitals in New York State. To be clear on what these teams do:

Palliative care aims to relieve suffering and improve quality of life for patients with advanced illness and for their families. It does so through assessing and treating pain and other symptoms; communicating about care goals and providing support for complex medical decision making; providing practical, spiritual, and psychosocial support; coordinating care; and offering bereavement services.

Palliative care is provided in conjunction with all other appropriate medical treatments, including curative and life-prolonging therapies. It is optimally delivered through an interdisciplinary team consisting of appropriately trained physicians, nurses, and social workers, with support and contributions from other professionals as indicated.Continue reading…

Should We Let The Death Issue Die?

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By PAUL LEVY

Paul levy

Did you read yesterday’s New York Times article by Anemona Hartocollis, entitled “Helping Patients Face Death, She Fought to Live“?

It was about a palliative care doctor who faced her own end-of-life issues in a very different manner from the way she would have advised many of her patients.

An excerpt:

[A]s the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”

She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.

While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival.

It is never right to be judgmental about these matters. Each person faces this kind of situation in his or her unique way, and we have no right to dispute the choices people make.

But I was struck by how this doctor personified the public policy debate that surrounds terminally ill patients. Here’s a an example of that kind of discussion from Canada (single payer, government run system!):

The high cost of dying has more to do with soaring health care costs than the aging population does, according to the Canadian Institute of Actuaries. In its submission to the Romanow commission on the future of health care, the institute said that 30 to 50 per cent of total lifetime health care expenditures occur in the last six months of life. Noting the sensitivity of the subject, the group suggested greater use of less expensive palliative care and living wills.

Dr. Pardi’s experience shows how hard it is to go from a policy-level discussion of such matters to the decisions made by individual patients and their families. Without giving credence to the nasty and politically inspired debate about “death panels,” the ambiguity in such situations suggests the difficulty in adopting formulistic approaches to the decisions around end-of-life care.

Besides abortion, it is hard to think of a part of medical practice that is more likely to be politically divisive and personally uncomfortable. Given that, is it worth the debate? Alternatively, how can we best have a productive discussion about it?

Some conversations are easier than others

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We’re continuing a tradition at THCB started last year. Asking you to take a moment this weekend to discuss your desires for how to live the end of your life as meaningfully as possible–If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here Matthew Holt

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.
It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

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Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.


(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )