Category: Extraordinary Measures

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A Good Death: A Father, a Daughter, an End-of-Life Decision

— Jennifer O’Brien’s father broke his hip while contending with advanced congestive heart failure. He declined surgery to fix it, opting for a peaceful death instead. She supported him. The system did not.

By Jennifer A. O’Brien, MSOD

“Your dad declined the surgery to repair his hip fracture,” the anesthesiologist blurted incredulously over the phone. “Okay. I guess there’s no surgery then,” I responded. “Well, here, talk to the orthopedic surgeon,” he protested. I shrugged and said, “Okay” to no one as the anesthesiologist handed the phone to the orthopedic surgeon. The surgeon came on: “Your dad declined the surgery!” he exclaimed. “I heard,” I said. “I mean, your father said ‘No!’” I could visualize the surgeon’s wide eyes.

My dad was 85 years old with advanced congestive heart failure and severe lung disease. He had fallen two days before and sustained a neck of femur (NOF) fracture, also known as a hip fracture. I had been very involved in my dad’s healthcare for several years. His mind was sharp.

Several years before that, he had signed a do not resuscitate (DNR) order, a legal document saying that in the event of a cardiac arrest he did not want to be resuscitated, as well as a do not intubate (DNI) order, a legal document stating he did not want to be intubated in an emergent situation in which he was unable to breathe. Because “Do not ____” instructs clinicians to hold something back, these code status documents may also be referred to as an instruction to “allow natural death.”

The orthopedic surgeon was unconvinced, however, and pressed on. “He declined the surgery!” “Yes, I heard. My dad is crystal clear cognitively and entirely capable of making this decision, so I guess you can take the rest of the night off,” I told him. The surgeon chuckled and mumbled, “I wish.” At this point, he seemed to realize that while he may have to work into the night, it would not include operating on Jim O’Brien. We said our goodbyes and hung up.

About 30 minutes later, I called my dad and told him that while I would have supported his decision either way, I felt he had made a good choice.

My dad’s congestive heart failure had reached the final stage. He barely had the strength to stand and ambulate enough for trips to the bathroom. A sudden cardiac arrest was distinctly possible, if not likely. His advanced lung disease meant that for the last two years, his ability to breathe had been entirely dependent on a bilevel positive airway pressure, or “BiPAP,” ventilator.

By “entirely dependent,” I mean he could not exist, for even a few minutes, without a large face mask that covered his nose and mouth while forcing oxygen into his lungs. He could eat for a few minutes at a time but had to have a nasal cannula in order to breathe.

He was likely to die soon, and a major surgery now might well have ruined any chance he had of a peaceful, comfortable end of life.

The reactions of the two physicians who called made me realize that our case was unusual, both because of my dad’s decision against surgery and my unequivocal support of his decision. I got the impression most family members would have responded, “Oh no, let me talk to him.” They would have then called and said, “Daddy, if you don’t have this surgery you are going to die!”

But here’s the thing, he was going to die.

And while our deaths may not be as imminent as his was, so am I and so are you going to die. At the end of life comes death. At the end of a long life, with or without comorbidities, an NOF fracture may indeed be the onset of that final phase of life.

My late husband, a surgeon for 30-plus years and then a retrained, board-certified palliative medicine physician for another 10 years, named this final phase of life “Precious Time.”

He always said it with the emphasis on the first word, Precious Time. Precious Time is when death is likely, if not imminent. Precious Time is a type of time, the period of life that comes at the end. Not everyone has Precious Time; a sudden death does not allow for Precious Time.

Knowing that a loved one is into Precious Time allows for saying what needs to be said and doing what needs to be done, such as: I love yous, apologies, and reconciliations. Precious Time allows you to keep to yourself and not say what you might later regret. In recognizing that we are into Precious Time, we can minimize or eliminate the subsequent I-thought-we-had-more-time regrets and focus on the love, the honor, and the bereavement rather than a vague or acute befuddled remorse because we just didn’t want to talk about end of life.

Even with surgery to repair the hip fracture, there is a 27 percent 12-month mortality rate among 65-plus-year-olds. That is, there is a 27 percent chance that an otherwise healthy 65-year-old will not survive more than a year post NOF fracture. Add more years and comorbidities, and that mortality rate only increases. In other words, an NOF fracture, with or without surgery, is often the beginning of the end.

Another statistic is that 80 percent of people want to die at home rather than in a hospital or facility, “hooked up to a bunch of machines,” yet only about 20 percent do.

If we put these statistics together and add our just-fix-it culture, which has us operating now and asking questions later, I submit that a patient having to remain intubated postoperatively or never recovering is not the way we make the most of that Precious Time and not the way that most people want to spend their last days, weeks, or months.

And, having now lost every member of my family, including my husband, I can say from experience that when surviving loved ones are able to recognize and face that they are into Precious Time, they are likely to have an easier transition to grief and loss.

Fortunately for my father and me, my late husband taught me well. After my dad’s decision to forgo the surgery, I got in the car and drove across the country. In his hospital room, we talked about the fact that he was dying, and that the most comfortable way for that to happen was to convert his inpatient status to hospice, remove the BiPAP after a sedative, and he would sleep into an entirely natural death.

My dad and I spent our Precious Time together. We said our goodbyes as the medication took effect. I told him I loved him because I know that hearing is the last sense to go. I stayed with him until he took his last breath and then made the disposition arrangements we had discussed years prior. It was a beautiful, peaceful death at 85 years old, one week post NOF fracture.

In the three years since I had allowed the art journal I kept during the 22 months I cared for my husband, and about 18 months after his death, to be published as the book The Hospice Doctor’s Widow: A Journal, I have spoken on what I call the Triad of Certainty:

  1. At the end of life comes death.
  2. There are no do-overs in end of life.
  3. Changed forever, surviving loved ones remain and remember.

There is absolutely no one who will not die at the end of life — no one. Some of us don’t get married, don’t have children, but all of us die. And if we are lucky enough to love others, there is a good chance that one or more of them will die before us and their death will have an impact on us for the rest of our lives.

I am not saying that if you or your elder loved one sustains a NOF fracture, they should forgo the surgery. I am saying that protocol for an NOF fracture in a patient older than 65 should call for a pause rather than an unquestioned trip to the OR.

And that pause should include a consultation with a family practitioner, gerontologist, palliative care team, medical ethicist, social worker, end-of-life doula or whoever can facilitate a meaningful conversation, or more likely a series of conversations. These conversations should assist the patient and family in recognizing Precious Time, establishing the goals of care, and having a say in designing their end-of-life experience (even if it ends up being years hence).

Complete Article ↪HERE↩!

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Aggressive Medical Care Remains Common at Life’s End

— Most older cancer patients received invasive care in the last month of their lives, a new study finds. That may not be what they wanted.

By Paula Span

In July, Jennifer O’Brien got the phone call that adult children dread. Her 84-year-old father, who insisted on living alone in rural New Mexico, had broken his hip. The neighbor who found him on the floor after a fall had called an ambulance.

Ms. O’Brien is a health care administrator and consultant in Little Rock, Ark., and the widow of a palliative care doctor; she knew more than family members typically do about what lay ahead.

James O’Brien, a retired entrepreneur, was in poor health, with heart failure and advanced lung disease after decades of smoking. Because of a spinal injury, he needed a walker. He was so short of breath that, except for quick breaks during meals, he relied on a biPAP, a ventilator that required a tightfitting face mask.

He had standing do-not-resuscitate and do-not-intubate orders, Ms. O’Brien said. They had discussed his strong belief that “if his heart stopped, he would take that to mean that it was his time.”

Listening in on the phone while a hospital palliative care nurse-practitioner talked to her father about his options, Ms. O’Brien provided a blunt translation to an always blunt man: “Dad, your heart and lungs are done.”

The next day, he declined surgery to repair his hip. A startled anesthesiologist and an orthopedist called his daughter, apparently expecting her to talk her father into agreeing to the operation. She didn’t try.

“He was dying,” she said in an interview. “He’d either die comfortably or, with a big surgical incision, he’d die uncomfortably. Or die of something more complicated — potential infections, bowel obstructions, so many things that can happen.” Mortality rates after hip fractures, though improving, remain high.

Her father, who wasn’t cognitively impaired, had decided that surgery was “silly” and unnecessary. She supported his decision and contacted a local hospice.

Families often have to run interference in such scenarios, and a new study in JAMA Network Open helps explain why. The authors, most of them at Case Western Reserve University School of Medicine, analyzed five years of data from a cancer registry, nursing home assessments and Medicare claims to look at “aggressive end-of-life care” among 146,000 older patients with metastatic cancer.

They compared nursing home residents’ care in the last 30 days of their lives with the care for non-institutionalized patients living in communities, the lead author, Siran Koroukian, a health services researcher at Case Western Reserve, said.

The team looked for commonly used markers of aggressive care, including cancer treatment, repeated emergency room visits or hospitalizations, admission to an intensive care unit, lack of hospice enrollment until three days before death, and death in a hospital.

“In all probability, hospice should have been considered” for these patients, said Sara Douglas, a co-author and oncology researcher at the Case Western Reserve University School of Nursing.

Yet the majority of both groups — 58 percent of community dwellers and 64 percent of nursing home residents — received aggressive treatment in their final 30 days. A quarter underwent cancer treatment: surgery, radiation, chemotherapy

Although studies repeatedly show that most patients want to die at home, 25 percent of the community dwellers and almost 40 percent of the nursing home residents died in hospitals.

Hospice leaders, palliative care specialists, health care reformers and advocacy groups have worked for years to try to lower such numbers. “Patients who received this type of aggressive care experience more pain, actually die sooner, have a much poorer quality of life at the end. And their families experience more doubt and trauma,” Dr. Douglas said.

Because the researchers used large databases, the study can’t indicate whether some patients actually opted for continued treatment or hospitalization. Some treatments the authors deemed aggressive could instead have been palliative, intended to increase comfort, like radiation to shrink tumors that might impede breathing.

Still, “these are really sobering statistics,” said Douglas White, director of the Center for Ethics and Decision Making in Critical Illness at the University of Pittsburgh School of Medicine.

>A lot of factors contribute to invasive actions in patients’ final days and weeks. Some originate within the health care system itself. Doctors may be reluctant to initiate difficult conversations about what dying patients want, or be poorly trained in conducting them.

“The minute you have this conversation, people assume, ‘You’re giving up on me,’” Dr. Douglas said. Even having an advance directive and a Physician Order for Life-Sustaining Treatment, or P.O.L.S.T., doesn’t always ward off aggressive treatment.

But studies also show that even when crucial discussions take place, patients and surrogate decision-makers frequently misinterpret them. “Families often leave these conversations with much more optimistic expectations than their doctors meant to convey,” Dr. White said.

His research has documented the effects of optimism bias. Surrogates understand positive prognoses more accurately than negative ones. They may grasp that most people in this situation will die, but insist that their particular loved one is different, fiercer, stronger. Misplaced optimism then leads to more aggressive treatment.

Sometimes, family demands prevail even over the patient’s own wishes. Jennifer Ballentine, chief executive of the Coalition for Compassionate Care of California, knew that one of her relatives didn’t want high-intensity care if he became terminally ill. But when he developed aggressive prostate cancer at 79, his wife insisted that he pursue treatment.

“He refused. He kept saying he just wanted to be in hospice,” Ms. Ballentine recalled. “She kept saying, ‘Absolutely not.’ ” He capitulated until, after three exhausting months of chemotherapy with several hospital stays, he died in hospice care.

The health care system could improve end-of-life care. When palliative care is introduced soon after a diagnosis, patients have a better quality of life and less depression, a study of people with metastatic lung cancer found. Though they were less likely to undergo aggressive treatment, they survived longer.

Palliative care doctors, skilled in discussions of serious illness, are scarce in some parts of the country, however, and in outpatient practices.

Adopting a so-called concurrent care approach to hospice might also ease these transitions. The Medicare hospice benefit requires patients to forgo treatment for their terminal illness; hospice through the Veterans Health Administration system, with more liberal criteria, allows patients to receive both treatment and hospice.

>A recent study of veterans with end-stage kidney disease, who were likely to die within days if forced to discontinue dialysis, shows the impact of concurrent care. Palliative dialysis — administered less often or for shorter periods than the standard regimen — can help control symptoms like shortness of breath.

“Being required to stop a treatment that is helping your quality of life can mean that you won’t sign up for hospice,” said the lead author, Melissa Wachterman, a palliative care doctor at Harvard Medical School.

In her study, veterans who discontinued dialysis when they enrolled in hospice received just four days of care before they died, so short a time that even expert hospices would struggle to provide full support. Those receiving concurrent dialysis as hospice patients, almost all through the V.A., averaged 43 days of hospice care.

Medicare has authorized pilot studies of concurrent care, but for now, patients and families must often seize the reins to make their end-of-life wishes known and determine how best to fulfill them.

>Some patients want every possible action taken to extend their lives, even briefly. For those who feel otherwise (former President Jimmy Carter, for instance), asking about palliative care and hospice can open the door to straightforward discussions.< James O’Brien was among the latter. His daughter drove 12 hours, from Little Rock to Santa Fe, to spend a quiet day with him. “We had some good time together,” she said. “We talked about what was going to happen.” She was there as the hospice team provided medication to keep him comfortable and withdrew the biPAP. “It was very peaceful,” she said. “I told him I loved him. I knew he could hear me. I stayed with him until he took his last breath.” Complete Article ↪HERE↩!

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Family Dynamics and Doctors’ Emotions Drive Useless End-of-Life Care

by Rutgers University

Researchers from Rutgers and other universities have developed a behavioral model that explains a long-standing healthcare mystery: Why do so many terminally ill patients undergo intense last-ditch treatments with little chance of meaningful life extension?

Surveys repeatedly indicate that nearly all people would rather die peacefully at home, yet painful, long-shot treatments remain common, and efforts to reduce usage have failed.

Previous analyses have mostly emphasized patients’ treatment preferences at the end of life. The new model, which its creators named the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE), focuses squarely on clinician psychology and family dynamics.

“Old models tended to assume that clinicians were purely rational agents, leading patients toward logical choices,” said Paul R. Duberstein, lead author of the study and chair of the Department of Health Behavior, Society and Policy at the Rutgers School of Public Health. “Once doctors have recommended a treatment or procedure, there’s enormous pressure on patients to undergo it.”

The TRIBE model combines two older theories – Socioemotional Selectivity Theory and Terror Management Theory – to explain why this happens. The model shows how emotional pressures on doctors and complex family dynamics provoke excessive efforts to cure incurable conditions.

“This model incorporates research showing that clinicians are emotional beings, like all people, and these emotions strongly impact their patients’ choices,” Duberstein said. “Doctors hate to ‘give up’ on patients, so they often recommend treatments with very little chance of success. That won’t change until we improve medical education and the culture of irrational biomedical exuberance.”

“Irrational exuberance” is a term that economist Alan Greenspan famously used to describe investor sentiment in the lead-up to the dot-com crash, but Duberstein and his colleagues said it has long affected doctors and patients as much as it has affected Wall Street. They read of one-in-a-million cures and irrationally believe that they or their patients will be that one in a million – just as people who purchase lottery tickets think they’ll be the lucky winners.

Pointing out the irrationality of the choice doesn’t affect doctors any more than it affects lottery players. Indeed, the researchers believe, it affects doctors less because, unlike gambling, which is often portrayed as a vice, the struggle to preserve life is typically portrayed as a virtue.  Motives to prescribe long-shot treatments are noble – to avoid death, save a life, “do all we can,” “fight a battle” and “never give up.” In this view, failing to prescribe long-shot treatments is tantamount to abandoning patients and, for patients, failing to try these treatments is tantamount to abandoning loved ones.

The authors, who also hail from Tulane, Rochester and Rowan, call for new approaches to clinical care and public education that will address the emotions that fuel useless treatments at the end of life. “At some level, every patient death is a potential source of shame for doctors and a source of guilt for surviving family members,” Duberstein said. “By changing the culture of medical education and broader cultural attitudes toward death, we can address the emotions and family dynamics that have prevented too many patients from receiving quality care in their final days and weeks of life.”

Complete Article ↪HERE↩!

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What Is a DNR (Do Not Resuscitate) Order?

— Sometimes a “natural death” is the best option for everyone

by Angela Morrow, RN

A do-not-resuscitate order (DNR) is a legally binding order signed by a physician at a patient’s request. Its purpose is to let medical professionals know you do not want to be resuscitated if you suddenly go into cardiac arrest or stop breathing.

People who are chronically ill often regard a DNR as a graceful way to leave the world on their terms. The details of a DNR are usually discussed at the time of admission to a hospital, nursing facility, or hospice program.

This article explains what resuscitation means, its side effects, and its survival rates. It also describes the rules that often frame do not resuscitate orders, how to make a DNR order work for you, and some of the ethical issues worth considering.

What DNR Means

You may have seen TV shows set in hospitals in which a patient in cardiac arrest gets cardiopulmonary resuscitation (CPR), comes back to life, and is back to their old self in no time. In fact, being resuscitated is not so simple and can be dangerous in its own right.

Procedures used to resuscitate someone include:

  • Chest compressions: When a person’s heart stops beating, the heart cannot pump blood to the rest of the body, including the brain and lungs. Pushing down on the chest repeatedly can help keep blood flowing throughout the body until heart function is restored.
  • Intubation: When breathing becomes difficult or impossible due to an illness or injury, a patient may be intubated. This involves inserting an endotracheal tube through the mouth and into the airway. The tube is then connected to a ventilator, which pushes air into the lungs.
  • Cardioversion: Cardioversion is used to correct abnormal heart rhythms, including arrhythmias and atrial fibrillation (also known as AFib). This may be done using a set of paddles to deliver an electrical shock to the heart or via medication.
  • IV medications: Medications that are sometimes used in the case of cardiac arrest include epinephrine, amiodarone, vasopressin, and atropine sulfate. These are “crash cart medications,” so named because they can be found on the wheeled cart that medical professionals use during an emergency resuscitation.

For a patient in cardiac or respiratory arrest, a DNR states that none of these tactics will be used.1

Respiratory vs. Cardiac Arrest

The difference between respiratory and cardiac arrest is that respiratory arrest patients still have a beating heart that’s pushing blood around the body. Cardiac arrest patients do not. In both cases, though, a patient is unconscious and not breathing. Respiratory arrest will always lead to cardiac arrest if nothing is done to treat it.2

Resuscitation Side Effects

It’s important to realize that even if you are successfully resuscitated, you may end up with significant physical injuries as a result. For example, because the chest must be compressed hard and deep enough to pump the blood out of the heart, it can lead to broken ribs, punctured lungs, and possibly a damaged heart.3

Those who are resuscitated may also suffer brain damage. This can occur due to lack of blood flow to the brain followed by abnormal cell activity when blood flow to the brain is restored. Generally, the risk increases the longer the duration of CPR.4

Resuscitation Survival Rates

Survival statistics for resuscitation vary widely, partly due to the fact that there are many variables involved, including the age and health status of the patient and whether CPR was performed in a hospital, where emergency support is available.

A 2021 review looked at research published from 2008 onward that focused on the outcome of CPR in patients age 70 and older following in-hospital cardiac arrest (IHCA) and out-of-hospital cardiac arrest (OHCA). Survival rates were 28.5% and 11.1%, respectively.5

Meanwhile, a Danish study found that 30-day survival rates among nursing home residents who received CPR after OHCA was only 7.7%6

Fatal Outcomes

It’s a painful irony that most people who suffer cardiac arrest are not in a hospital, nursing facility, or hospice program. About 70% of them are at home, and the vast majority (about 90%) die. CPR can double or triple a person’s chance of survival.7

Types of Orders

A DNR order is sometimes referred to by other names, though the directive not to resuscitate someone is the same. Two other names for these orders are:

  • No code: In a hospital, an order to withhold resuscitation is sometimes called a “no code” to distinguish it from a “full code” or “code blue,” both of which mean every effort should be made to resuscitate a patient.
  • Allow natural death (AND) orders: While a DNR order simply states that no attempts should be made to restart breathing or restart the heart if it stops, an AND order ensures that only comfort measures are taken.8 This would include withholding or discontinuing resuscitation, artificial feedings, fluids, and other measures that would prolong a natural death. These orders are typically used in hospice settings or elsewhere for terminally ill patients.

Discussion Matters

A study on DNRs and ANDs finds “healthcare providers should address the concept of natural death, provide comprehensive information, and help patients and families to overcome the barriers.”8

DNR Order Rules

The application of DNR orders varies from state to state, especially regarding out-of-hospital (meaning ambulance) care. Some states have standardized forms for DNR orders; if the order is not written on that specific form, it cannot be honored. Other states are less regimented and honor any type of clear DNR order.

Many states allow emergency responders to follow DNR orders written to other care providers, even if they aren’t written on standardized forms. For instance, in New York State, paramedics and emergency medical technicians are usually allowed to follow DNR orders written for the staff of a nursing home.

They also may be able to honor orders written for patients getting nursing care at home if the home care nurse has a copy of the DNR order in hand.1 Each state is different, and municipalities may differ within each state.

Regardless of the format or the venue, DNR orders almost always follow some of the same general rules; they have to in order to be valid. DNR orders must:

  • Be written by a doctor rather than verbalized.9 There are exceptions to this rule, such as an emergency medical service physician ordering an ambulance crew to withhold resuscitation via the radio or a registered nurse taking an order from an admitting doctor over the phone.1 Generally, there are safeguards for these exceptions to make sure the order is validated later.
  • Be signed by a doctor. In those cases where orders were taken by a nurse over the phone, states usually set a deadline for the doctor to physically verify and sign the order.
  • Include the patient’s name as well as the date. Depending on the state, orders may expire after a certain amount of time or there may be a deadline for the physician to follow up. Even if a DNR order doesn’t expire, a particularly old order may prompt a caregiver to revisit the decision.
Diligence on DNR Orders

A doctor writes a DNR order only after conferring with the patient (if this is possible), the patient’s appointed representative, or members of the patient’s family.

Making a DNR Order Work for You

If you opt for a DNR order, here’s what you can do to ensure your wishes are respected:

  • Keep the physical order on hand and display it wherever paramedics might find you. Make a point to tell them about the order when they arrive. It’s a good idea to have more than one copy available and displayed, as well as a copy to bring with you to the hospital.
  • If you are traveling, ask your traveling partners to keep a copy of your DNR order on them at all times.
  • Consider wearing a piece of medical jewelry to alert others of your intentions. MedicAlert Foundation provides jewelry designed specifically for patients with DNR orders. The foundation keeps a copy of the order on file and can fax it to anywhere in the world.

DNR Expresses Limits

A DNR order addresses the issue of CPR, but it does not include instructions for other treatments, such as pain medication or nutrition.10

Ethical Complications of DNR Orders

The inconsistent application of DNR orders means some patients may get less than optimal care once providers are aware of the presence of a DNR order.11 It’s important to remember that a DNR order is not an order to withhold all treatment. It’s an order not to resuscitate.

Even the mere mention of “DNR” can spawn a wide range of reactions, many of them emotionally charged. Discuss the options with your doctor and your family when everyone is calm and rational—and hopefully sooner rather than later.

Why a Patient Would Choose to Have a DNR Order

People with a terminal disease, such as advanced cancer or dementia, may not want CPR. A poor prognosis lowers the likelihood of survival, with a higher risk of heart, lung, and brain damage if resuscitation is attempted. Views on CPR within the medical community are ever-evolving too, with some professionals revisiting guidelines on how and why resuscitation should be considered.12

Summary

A do-not-resuscitate order instructs healthcare providers to refrain from cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. It can also pose a dilemma, but one worth considering, especially in the context of your health (or the health of a loved one).

Here’s why: CPR requires the heart to be compressed hard and deep enough to pump the blood out of the heart. As such, it can lead to broken ribs, punctured lungs, and possibly a damaged heart. Those who are resuscitated may also suffer brain damage.

These actions may be too much for someone in frail health. If you wish to explore a DNR order, it’s important to know that the orders vary from state to state. Be sure to investigate the rules in your state before proceeding.

A Word From Verywell

Understandably, loved ones often have difficulty talking about a DNR order and may feel they are “giving up” on their loved one. You can take charge of your end-of-life plans while you’re still able to do so, and investigate the rules governing DNR orders in your state. Keep in mind that even if you get a DNR order, you have the right to change your mind, revoke the order, and request CPR.10

Frequently Asked Questions

  • How do you get a do-not-resuscitate order?

    You can get one from a hospital, nursing home, or hospice program. Most states have standard forms that you can download online.

  • Who can sign a do-not-resuscitate order?

    A doctor must sign a DNR order with the consent of the patient or the patient’s healthcare proxy or designated power of attorney.9

  • Can a DNR be ignored?

    The Patient Self Determination Act (PDSA) requires that the wishes of an individual and any existing advance directives be honored in the United States. However, providers do occasionally disregard a DNR due, for example, to lack of communication.13 It’s also possible that an existing DNR is honored but providers fail to confirm with a patient or their representative.14

    • Complete Article ↪HERE↩!

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Exploring the ordinary and extraordinary in end-of-life care, death

Dr Samuel Labaron PhD, M.D. at Stanford Hospital and Clinics on Thursday, November 12, 2009.

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Samuel LeBaron, MD, PhD, is a family medicine specialist and Stanford Medicine professor emeritus who now faces the situation he guided patients through during his career: navigating terminal lung cancer. In his memoir, Ordinary Deaths, published in July, LeBaron weaves personal stories with vignettes that illuminate the patients whose lives he’s witnessed.

Throughout his career as a family medicine doctor, hospice care provider and technician in a medical examiner’s office, LeBaron jotted down stories of his patients, intent to one day share them with his inquisitive children who asked what he did every day. He chose his words carefully, creating a repository of clinical experience, much of it from a time before hospice existed.

I asked LeBaron to share more about his career and the stories he’s said were a salve in coming to terms with his own mortality.

You’ve talked about how you saw death as a child. What does that mean?

Up until about 5 years old, children have not yet adopted the notion of cause and effect. By the time we’re in the third or fourth grade, we’ve learned we live in a world of rules. So we think the way we live our lives determines how our lives end. One might think that a happy person would feel a bigger loss when they’re facing death. That seems logical. But I’ve personally experienced the opposite. I think of it as a phrase: “I could die happy now.” If we have time to accept our death as the end of a happy life, we’re much more ready to accept it.

The title describes death as “ordinary.” How can death bring meaning to our everyday lives?

The book title was partly ironic because every death I witnessed was extraordinary. On the other hand, they are ordinary deaths in the sense that this happens to everyone in some form or another. Put another way, there is really nothing extraordinary about waves. They just wash up and down the shore, but we love them all the same. And they may help create an extraordinary experience. We may go to the ocean to shed our tears and feel a little bit of comfort from that gentle, constant roll in and out. Our deaths are similar in that way: ordinary and extraordinary at the same time.

What guidance can you share with doctors offering end-of-life care? What have you done for patients in their last hours that you think made the biggest difference to them?

What loosens the tongue faster than anything is a safe, sympathetic environment. There are two basic prompts you need to know: Tell me about yourself and tell me more. Ask questions. Invite the exploration of the question and give a response to let them know they’ve been heard: “I can imagine that was very difficult. I really appreciate you letting me into that story.”

It helps the patient feel heard and valued.

The great tragedy is that for the most part, American physicians — the sweetest, most jolly, most interesting people you could want to meet — are on a treadmill, often seeing too many patients to have time for deeper connection.

What value does writing bring to your life, especially as you face your own illness?

Writing is incredibly meaningful in my life. When I was 14, I found it difficult to communicate the way I wanted. I went from a gregarious, playful kid to a reticent teenager.

I also became distant with my brother. But then something quite remarkable happened: We began to write little stories and sometimes letters to each other. They were all about adventure; some of them were entirely fiction, all of them outrageous, and they entertained us and made us laugh. There were times when we would stay up all night, doing nothing but writing stories. It was so much fun, and it drove my parents crazy.

And then, in my 40s, it occurred to me that all the knowledge gleaned from my patients could disappear if I didn’t write any of it down. Since then, it’s been a process of reintegration after feeling like a bomb went off in my house when I learned of my diagnosis.

My wish is that these stories and lessons be used as a guide — to show people how to be present and supportive, how to let people know you hear them and help them get what they need.

Complete Article ↪HERE↩!

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Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

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Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article ↪HERE↩!

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Race and ethnicity affect end-of-life care for dementia patients

— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” says Elizabeth Luth.

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Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.

Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.

“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.

“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”

To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.

In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.

The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.

The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.

“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.

“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”

Complete Article ↪HERE↩!