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!

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!

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!

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!

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!

What happens when a patient isn’t actively dying or recovering on their own?

Writing for the New York Times, Daniela Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital, explains how doctors and loved ones “navigate death” in cases where “it becomes clear that the life that we can offer is not one that would be acceptable to the patient.”

Making the decision to ‘transition to comfort’

Many people believe that ICU doctors can easily determine whether a patient is going to die, but that’s not always true. “Our medicines and machines extend the lives of patients who would otherwise have died,” Lamas notes.

When a patient is fully relying on these measures—and it has become clear that they are not actively dying but are not improving either—doctors and family members must figure out how to “navigate death when it is not imminent and unavoidable but is instead a decision.”

During Lamas’ medical training, death unfolded in one of two ways: either in a moment of crisis, with doctors rushing into the room, trying to save a patient’s life, or in a quiet room, with loved ones gathered for the patient’s final breaths.

However, Lamas contends that there is a third form of death “when it becomes clear that the life that we can offer is not one that would be acceptable to the patient,” she writes. According to Lamas, this kind of death is planned for, occurring only after the medicines and machines keeping the patient alive are withdrawn.

“It is a strange thing to plan a death, but I have come to understand that this is part of our work in the I.C.U.,” Lamas adds.

For instance, Lamas recently cared for a cancer patient who had been intubated after experiencing a flare-up of underlying lung disease. Before the patient was put to sleep, she instructed her son to “Give her a chance to get better, but if that failed, she did not want a tracheostomy tube for a longer-term connection to the ventilator or months at a rehabilitation hospital,” Lamas recalls. “Her cancer was progressing, and that was not the way she wanted to spend the last year of her life.”

Lamas told the patient’s family that they would continue intensive interventions for two weeks, in “a time-limited trial of critical care.” According to Lamas, if the patient was not breathing on her own after two weeks, she would never be able to breath without a tracheostomy tube and extended rehabilitation—a best-case scenario the patient had already deemed unacceptable.

The day before the time-limited trial was supposed to end, the patient’s son and daughter told Lamas that they wanted to take her off the machines that evening if she was not going to improve.

There is something uncomfortable about these conversations, where it feels as though we are asking family members to plan the end of a life,” Lamas writes. “It begins with a moment in the family meeting, when we have made the decision to ‘transition to comfort,’ and family members ask me what comes next.” However, “What they are asking, really, is how their loved one will die,” Lamas notes.

The ‘principle of double effect’

After loved ones have made the decision to “transition to comfort,” Lamas explains the next steps. “I tell them that when they are ready — as anyone really can be for any of this — we will stop the medications and the tubes that are prolonging life,” she writes.

In addition, Lamas explains that the bedside nurse will administer other medications to ensure that the patient does not experience pain. “Sometimes they ask if this medication will hasten death, and I explain that it can, but that our primary goal is always to relieve discomfort,” she adds.

Doctors refer to this balance as the “principle of double effect.” According to Lamas, doctors “accept the risk of a negative consequence like hastening death, so long as our intended outcome is to help the patient by alleviating symptoms.”

Ultimately, the pain-relieving drugs doctors administer during this process do not cause a patient’s death. Instead, they ensure that patients are as comfortable as possible while dying from their underlying disease.

Complete Article HERE!

Who Are We Caring for in the I.C.U.?

By Daniela J. Lamas

We gathered as a medical team in front of my patient’s room early one Saturday. She was one of the sickest patients in the intensive care unit. Her lungs were destroyed by cancer and a rare reaction to her chemotherapy, and her condition worsened each day, despite aggressive interventions. It was clear that there was nothing more that we could do. Except to keep her alive until Monday.

Struggling to come to terms with this reality, her family had begged us to continue our interventions through the weekend. So we would keep her intubated, deeply sedated and, we hoped, pain-free, performing the rituals of intensive care until the family was ready to say goodbye.

There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones. Often these two aims are not inconsistent: Even when family members like these are not ready to stop life-prolonging interventions or ask for a treatment that is unlikely to work, they are speaking on behalf of the patient. But increasingly I wonder if it is possible to go too far to accommodate family. When a patient is at the end of life, what is our responsibility to those who will be left behind?

On another recent shift, I received a call from a colleague at a different hospital. He was caring for a patient in his 60s with severe respiratory failure after a coronavirus infection. The patient’s family was desperate for him to be transferred to our hospital, a larger institution with greater resources. But intensive care unit beds were a scarce resource, and there was no clear medical reason for the transfer. His team had already done everything that we would do, and the simple act of transferring someone so sick could be catastrophic. I was the critical care doctor on call, charged with accepting transfer requests, and it would have been easy to say no. But then there was the matter of his family.

The patient arrived overnight, just as sick as we expected. His oxygen levels had dipped in the move and never recovered. Standing outside his room the next morning, his wife asked me if I thought the transfer had been a mistake.

Maybe it was. Not because his numbers were worse; that was inevitable, regardless of the transfer. But because I had made the choice to bring someone to our hospital in large part so that his family members would believe they had done absolutely everything. Of course, family request alone is not a sufficient reason for a hospital transfer. And though I suspected that we would have nothing more to offer in terms of medical interventions, that was not possible to know with absolute certainty when the other hospital called. But perhaps even more important, I did not want his family to wonder what might have been.

And so the transfer was an act of caring for him, too, to leave his family without regret. I do not believe that we went against his wishes, sacrificed his dignity or caused him pain. When he died a few days later, it was peaceful, with his family at the bedside.

But that’s not always the case. Not infrequently a family will demand that doctors perform chest compressions and shocks if someone’s heart stops, even though we are nearly certain it won’t help. I used to find myself infuriated by these conversations. On occasion I have used hospital policy to take the decision away from the family altogether. But maybe that is not the only response.

Some years ago, Dr. Robert Truog, a critical care doctor and ethicist at Harvard, published a provocative essay arguing that there may be a role for cardiopulmonary resuscitation if it is necessary for the family, even if it will not directly benefit the patient. He told the story of a chronically ill child with a dismal prognosis whose parents were unwilling to stop aggressive measures. During one hospital admission, the child’s heart stopped, and at the parents’ behest, the team moved forward with attempts at cardiopulmonary resuscitation. When the efforts ended and the child had died, the parents entered the room, surveyed the detritus of the cardiac arrest, the lines and the tubes, and surprised the medical team members by thanking them for doing everything. Dr. Truog wrote that even if it was futile from a medical perspective, what he had come to realize was that the procedure let the family members know that the doctors had tried. That was the way to give them a narrative they could live with.

I am still not sure what to make of this argument. We would not resuscitate patients against their stated wishes, regardless of what their loved ones want. But in these moments, we are so often making decisions for both the patients in front of us and the people who will carry their story forward. And so maybe resuscitation attempts can be for a family just as much as or even more than they are for a patient. Maybe in some cases, that is justification enough.

But at the same time, I worry that even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that are just that: a performance. I wonder, too, whether this very scenario means that doctors have failed. Perhaps if we were clearer communicators, no family members would choose for their loved ones to undergo intensive treatments that only postpone the inevitable.

That Saturday in the I.C.U. passed quietly for my cancer patient. But when I returned on Sunday, I learned that her blood pressure and oxygen levels had started to teeter when the nurses turned her, as they did every few hours to prevent bedsores. The daily activities of critical care were beginning to cause harm. We had planned to wait until Monday to readdress goals with the family, but was that the right choice? I hoped my patient was pain-free but could not guarantee it. And perhaps it was unkind to allow her family to spend another day hoping she might improve when we knew that to be impossible.

We called in her adult children and told them that their mother was dying. They cried and questioned, and I asked myself whether I should have waited, but they ultimately understood. If there was no way that doctors and nurses could make their mother better, then they would focus on her comfort. They gathered by the bedside. We waited for a chaplain. And late that night, in the last of our many rituals, a nurse disconnected my patient from the ventilator, ensuring she had enough medications so that she would not struggle. It was a final act of compassion, at once for the patient, her family and for us, too.

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