Comedian Laurie Kilmartin Live-Tweets Her Mom Dying of COVID-19 With Humor and Grace

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Laurie Kilmartin is a stand-up comic and longtime writer for Conan O’Brien. When her dad was dying in 2014, she live-tweeted his hospice care with an incredible sense of humor. After he died, she released a comedy special called, 45 Jokes About My Dead Dad, a tender and hilarious special that tackles the issues of dealing with death and dying head-on. Later, she wrote a humorous book about death and grief called, Dead People Suck: A Guide for Survivors of the Newly Departed.

On June 18, 2020, Laurie’s mom died after a short and intense battle with COVID-19. And for a week or so before, Laurie live-tweeted the whole experience of spending her mom’s last moments with her on an iPad. Her tweets are equal parts hilarious and heartbreaking, not to mention full of righteous anger about the COVID-19 crisis and the way some people are denying it’s an issue.

The sense of humor with which she was able to approach the situation is so admirable, and the vast majority of people were extremely supportive. Still, Laurie had to deal with some snide comments from persnickety people in her mentions.

“I hope she doesn’t see your Twitter account,” one person wrote, speaking about Laurie’s mom. “She won’t, because she’d dying,” Laurie simply responded. 

For several days, Laurie and her sister sat with their mom on FaceTime, connected through an iPad. Her mom had entered a skilled nursing home for a bad hip injury, and it was there that she contracted COVID-19. 

“When we knew we had to put her in one for strength building, they’re all closed or they all have had COVID outbreaks, so they’re not taking any people,” Laurie told ABC7. “I was given two options, and one was an hour away and one was kind of close. And I picked the close one, and they had a COVID outbreak.”

“The day after mom entered her nursing facility, there was one case of COVID,” Laurie tweeted. “I just called, now there are 50 cases of COVID associated with this facility, employees and patients. Ten days later. This is Highland Park, in Los Angeles.” In another tweet, she wrote, “Thinking I should have sent my mom to recover at a meat-packing plant instead.”

She and her sister fought extremely hard to get to visit their mom. The hospital she was being treated at stopped allowing visitors because of the pandemic, but Laurie rallied friends and fans to contact the hospital, and eventually, they modified their rules. Laurie and her sister were able to spend about an hour with her mom on the Monday before she died.

The rest of the time, they were stuck on the iPad. Much of Laurie’s very understandable anger about her mom’s death on Twitter has been directed at those who still refuse to wear masks to help prevent the spread of the virus, notably, former baseball played Aubrey Huff.

He tweeted saying that he would no longer wear a mask inside any business because “it’s unconstitutional to enforce.” Laurie wryly responded that she was in the midst of watching her mom die of COVID-19 and that “her bed will be ready for you in 12-24 hours.” She then posted an update once her mom had passed that just said, “The bed’s available.”

Laurie lamented that even after her mom died of COVID-19, she still has family members who believe that the mandate to wear masks in public is “unconstitutional.” Wearing masks has been proven as an effective way to protect communities from the spread of COVID-19. 

It’s a simple, easy thing to do to protect others, and anyone who isn’t willing to is saying that they just don’t care about other people. “In lieu of flowers,” Laurie tweeted after her mom’s death, “the family asks that you throw hot coffee on the face of anyone not wearing a mask.”

Complete Article HERE!

“I’m letting her down by seeing her suffer:”

managing a cancer home death during the pandemic

What is it like to care for someone you love who is dying from advanced cancer at home during lockdown?  Kate Binnie discusses it can heighten isolation and moral distress for the family caregiver

One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:

In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away.

The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comforta slow death is not comfortable for anyone no matter how you sugar-coat it.

Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on. [1] What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.

I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance. My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion.  It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation.

I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick.  Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs.

Alan’s complex feelings about being in charge of controlled medications do not appear to be singular.  A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one. [2] Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief. [3] A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.

How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?

With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose.

How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain? At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised. It would never have been mum’s choice to die this way.

In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?

Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication.  It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. [4]

A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party. It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.

I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key. [5] In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality. [6] And remember, this was pre-lockdown. I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.

I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared. [7] Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.

The next morning, I check my phone. Mum died at 3.45am.

I call Alan who is relieved and exhausted He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown. There isn’t going to be a funeral.  I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it? No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?

The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage. But deaths like Mary’s from cancer are happening every day, all the time.

Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown. Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”.

Complete Article HERE!

When life support is withdrawn, commitment to care must not end

By Timothy M. Smith

Physicians caring for the sickest patients with COVID-19 sometimes have to make the difficult decision to withdraw life-sustaining treatment. However, that painful choice does not obviate a physician’s obligation to provide supportive care to dying patients thereafter.

The AMA has created an ethics resource page, “Caring for patients at the end of life,” that offers expert advice on the ethical and emotional challenges involved. Citing numerous opinions from the AMA Code of Medical Ethics, the page provides a comprehensive guide to eliciting and following patients’ wishes for how they want to die.

More broadly, the AMA and the Centers for Disease Control and Prevention are closely monitoring the COVID-19 pandemic. Learn more at the AMA COVID-19 resource center. Also check out pandemic resources available from the AMA Code of Medical Ethics, JAMA Network™ and AMA Journal of Ethics®, and consult the AMA’s physician guide to COVID-19.

A transition, not an end

“A decision to withhold or withdraw life-sustaining treatment is not a decision to withhold or withdraw care entirely,” the page says. It goes on to quote the Code opinion on “Withholding or Withdrawing Life-Sustaining Treatment,” which requires that physicians reassure “the patient and/or surrogate that all other medically appropriate care will be provided, including aggressive palliative care, appropriate symptom management if that is what the patient wishes.”

Citing the same opinion, the page notes the emotional toll this process takes on everyone involved and recommends establishing the patient’s preferences and setting specific goals for care.

Ideally, patients will have already expressed their end-of-life wishes to their physicians or their surrogates. Often, though, patients haven’t given much thought to the care they will want or not want at the end of their lives. In those situations, per the Code, physicians should “elicit the patient’s values, goals for care, and treatment preferences” and capture those preferences in the patient’s medical record.

If the patient lacks decision-making capacity, the resource page notes, his surrogate may make health care decisions on his behalf.

Read the Code opinion on surrogate decision-making.

Understanding advance directives

If, however, the patient has an advance directive, the preferences set out in the directive should govern care decisions.

“Some physicians think advanced directives are only useful for declining care. They’re not. You can say what you want,” said Elliott Crigger, PhD, director of ethics policy at the AMA. “Now, you may not get it—there may be reasons why it won’t work—but you can say what you wish and how you want to die. And that includes either declining care or asking for care.”

There’s a similar misunderstanding around do-not-resuscitate orders, Crigger noted.

A few physicians may wrongly interpret a DNR order as a sign that the patient also is less interested in other supportive care. “But that’s not what it means,” Crigger said. “It means, ‘Don’t resuscitate me.’ It doesn’t mean, ‘Don’t provide every other kind of supportive care you can.’”

Read the Code opinions on advance care planning and the use of advance directives.

When sedation is appropriate

“When it proves impossible to adequately manage symptoms despite vigorous palliative care efforts, for some terminally ill patients an option of last resort is sedation to unconsciousness,” the page says.

Referring to opinion 5.6, “Sedation to Unconsciousness in End-of-Life Care,” the resource page notes that physicians should reserve this option for patients in the final stages of terminal illness and “ensure that options for appropriate, symptom-specific palliative care have been exhausted, ideally in consultation with a multi-specialty team,” adding that the patient or his surrogate must give informed consent before sedation is administered and the decision should be recorded in the patient’s medical record.

Read about a score-based framework for determining priority access to ventilators and other scarce resources.

Complete Article HERE!

Death, one day, is inevitable. Suffering should not be.

A temporary hospital at the Javits Center in New York on March 27.

By Sebastian Mallaby

About a month before the coronavirus pandemic engulfed us, my mother understood that she was dying. She had cancer. She had struggled to swallow food and maintain her weight. She was so light that I could lift her like a 12-year-old. On her firm instructions, the ambulance we children had arranged to take her to the oncologist was rerouted to a hospice. There, she received tender and expert end-of-life care. After four days, she died: peacefully, without pain, and with her family around her.

Today, this memory feels weirdly distant. In Italy and Spain — and soon in other countries — patients are dying in opposite conditions to the ones my mother experienced. They go to hospitals hoping for treatment. But, for lack of ventilators, some of them die gradually, alone. Visits from loved ones are often prohibited.

The flood of commentary on the pandemic focuses, correctly, on how to reduce fatalities. But we should also consider how to ease the loneliness and pain of those deaths that are inevitable. No one wants to die slowly in a medical hangar, cut off from family and friends. Rather, most want something as close as possible to what my mother had. They want to choose their own balance between prolonged life and prolonged pain. They hope to have the right to reconsider their choices.

Of course, in the current crisis, the hospices cannot serve everybody, and infectious disease presents risks to caregivers that cancer does not. The imperative is, therefore, to give people the tools to manage death at home, as humanely and safely as possible. Yet this component of our response to the pandemic is missing. We have not grappled with the need to distribute morphine to those who are suffering, even if this is a risky course, as the opioid crisis makes obvious; once we have finally supplied our medical professionals with the masks and other protective gear they need, we need to do the same for family caregivers. But we do not discuss these things, because we are determined to resist death, not dwell on the question of how we might go about dying.

My mother’s last lesson to her children was that this obstinacy is mistaken. While I was vainly learning all I could about her treatment options, she was coming to terms with the reality she could feel around her liver. “No more abracadabra,” she told me fiercely, when I protested that it was too early to give up. She knew she would soon die, and she wanted a good death.

A good death requires lucidity, not magical thinking. Today, this means confronting the reality of overloaded hospitals, and being honest about their inability to help all those who are stricken. In Italy, doctors have had to perform a kind of triage normally seen in wartime: They allocate life-saving ventilators based on age and health status. The same has happened in Madrid, where hundreds queue to be admitted to emergency rooms. Countries such as the United States and Britain will be lucky to escape this fate. New York’s governor, Andrew M. Cuomo, has repeatedly sounded the alarm about the shortage of ventilators. “You’re going to be thousands short. Thousands,” he said on March 15.

Hospitals don’t like to talk about the terms of the triage. Like the rest of us, they prefer to focus on preventing death; they recoil from being explicit about when death might have to be accepted. As a recent article in the New England Journal of Medicine noted, the absence of clear guidelines burdens front-line clinicians, who are forced to make heart-rending choices — doctors in Italy have wept under the pressure. But the absence of clear guidelines also leaves citizens adrift. If you or I fall seriously ill, will we have access to a ventilator?

Last week, two medically connected relatives called me. Being well informed and 70, they both know they fall on the wrong side of any triage. They have therefore resolved that, if their lungs begin to fail, they will avoid going to the hospital. At 70 — even in their 80s — patients still have a good chance of surviving covid-19 at home. But if they do not, my relatives’ definition of a good death is to be together at the end, even at the risk that one will infect the other. All that they ask is access to the palliative drugs that will control the suffering.

Society should think about the millions of people who are not medical insiders, and who should be helped to understand the choices that may potentially confront them. No doubt if governments and hospitals made public their criteria for triage, people would be horrified. But at least they could decide whether to seek help at a hospital or remain in their own beds. And the medical authorities, having leveled with the citizens, could be more forthcoming about the help available at home. To anyone who has witnessed death, it would be a huge relief to know that at least the pain can be managed. Death will be inevitable for each of us, one day. Terrible suffering should not be.

Complete Article HERE!

He Was Already Sick.

Was His Life Worth Less Than Yours?

With the coronavirus upon us, Americans now must confront death up close.

By

Before this novel coronavirus ever reached American shores, I heard dark tones of reassurance. Don’t worry, people said. It kills only the old and the sick. The thought, a temporary (and misleading) escape from rising panic, crossed my mind, and surfaced in conversation. When I spoke last week to Jessica Smietana, a 30-year-old doctoral student in French literature at New York University, she admitted the thought had occurred to her, too. “I remember saying, ‘Well, you know, when it’s reaching people that aren’t in vulnerable populations, that’s when I’ll worry about it.’”

And then, like many of our unsavory national tendencies, the sentiment took an exaggerated, grotesque form in the statements of President Trump. “We cannot let the cure be worse than the problem itself,” he tweeted in all-capital letters, signaling that he might urge states to lift protective restrictions on gatherings and businesses rather than continue to incur economic costs. In that calculus, the lives of the sick and dying became a mere data point in an actuarial account of the coronavirus pandemic’s economic impact. Mr. Trump has since changed his view, saying, “the economy is number two on my list. First, I want to save a lot of lives.”

Rightfully so. Such an easy dismissal of the sick and elderly is a ghastly indictment of one of our most cowardly cultural reflexes: an abandonment of the dying as a means of wishing away death.

It’s a weakness only the lucky can long afford, and in the midst of this pandemic, their numbers are swiftly shrinking. As coronavirus cases in the United States multiplied, Ms. Smietana, like many of us, found reason to reconsider her initial response. Her 63-year-old father, Bruce Smietana, began chemotherapy treatment for early-stage pancreatic cancer last month. “I realized what a terrible attitude this is,” she told me. “We shouldn’t think of that as an acceptable outcome — ‘Well, all these people were going to die soon enough.’”

In America, Ann Neumann writes in “The Good Death,” “death has been put off and professionalized to the point where we no longer have to dirty our hands with it.” But with the coronavirus, death has drawn too near to ignore. And this is a good thing. The dying, their value and their particular wisdom should never have been banished from our common life in the first place.

The physicians who accompany people as they face death have a unique perspective on mortality, perhaps thanks to the example of their remarkable patients. I spoke to Christopher D. Landry, a postgraduate trainee in the Columbia University psychiatry department, last month, during his emergency medicine rotation. “A lot of young people feel that life in the shadow of death is no life at all,” Dr. Landry said. “But everybody approaches that shadow eventually. And then, even people who were previously young and healthy learn to appreciate the many good things in life that they’re still able to have.”

The prospect of death also prompts a philosophical evaluation of life. These reckonings can bring the blur of ordinary life into sharp and brilliant focus.

At 19, Ms. Smietana lost her mother, and later, her older sister. From that point on, her family consisted of herself and her father, a stoic and steadfast garbage man who worked for the city of Chicago for some 30 years. Ms. Smietana told me that she had always been close with her father, but that their relationship became even more vital after the loss of her sister and mother. “That’s made this whole situation a little more intense,” she said.

The threat of the coronavirus kept Ms. Smietana from being with her ailing father.

Her father’s battle with a miserable disease has led her to contemplate justice, or the lack of it. He had already lost so much. Because the chemotherapy weakened his immune system, she wasn’t permitted to visit him during his treatment. He would be alone. As we spoke, her voice thinned with tears. “It feels tremendously unjust,” she said.

What Ms. Smietana saw was that the presumption of fulfillment — that the elderly have lived life, and can ask little more from it — is mistaken. As much as any young person can hope to feel more love, happiness, curiosity, satisfaction in the balance of life, so can the aged and the ill. In fact, they may experience those good things in life even more acutely for recognizing their scarcity.

In that respect, the dying may be more alive than any of us — more awake to the truths that emerge at the end of all things, and more aware of the elements of life that lend existence its meaning.

When I spoke to Mr. Smietana on the telephone, he was recovering from chemotherapy in the midst of a pandemic. But he didn’t ruminate on pain; instead, he talked about gratitude. He told me about Jessica, how she would be the first doctor in the family. He looked forward to her graduation, and to all of the other things he had no doubt she would accomplish; “she’s an amazing daughter,” he said.

And then he drew a labored breath, still exhausted from his treatment. “I’ve had a relatively great life,” he reflected. “I lost my wife, and I lost one of my daughters. But besides that, I’ve been pretty damn lucky.”

Mr. Smietana died a week later, on a cold Sunday morning in Chicago. He awoke that day with breathing trouble, and passed shortly thereafter. When I spoke with Ms. Smietana, she was still thinking about justice, or the lack of it. “Coronavirus is the reason I didn’t get to see my dad during what turned out to be the last week of his life,” she said. “It was the right thing to do. But I will regret it forever.”

Complete Article HERE!

Between life and death:

What a neurologist learned when his brother-in-law fell into a coma

In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”

A family member’s aneurysm leads to difficult decisions

Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.

“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.

This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”

In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.

Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.

Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.

Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.

Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.

The importance of empathy and connection

“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”

To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”

Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”

In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”

Complete Article HERE!

Dying in the Neurosurgical I.C.U.

In cases of brain death or neurologically devastating injury, poor communication can make painful situations even harder.

By Joseph Stern, M.D.

The bullet hole in the teenager’s forehead was so small, it belied the damage already done to his brain. The injury was fatal. We knew this the moment he arrived in the emergency room. Days later, his body was being kept alive in the intensive care unit despite an exam showing that he was brain-dead and no blood was flowing to his brain. Eventually, all his organs failed and his heart stopped beating.

But the nurses continued to care for the boy and his family, knowing he was already dead but trying to help the family members with the agonizing process of accepting his death.

This scenario occurs all too frequently in the neurosurgical I.C.U. Doctors often delay the withdrawal of life-sustaining supports such as ventilators and IV drips, and nurses continue these treatments — adhering to protocols, yet feeling internal conflict. A lack of consensus or communication among doctors, nurses and families often makes these situations more difficult for all involved.

Brain death is stark and final. When the patient’s brain function has ceased, bodily death inevitably follows, no matter what we do. Continued interventions, painful as they may be, are necessarily of limited duration. We can keep a brain-dead patient’s body alive for a few days at the most before his heart stops for good.

Trickier and much more common is the middle ground of a neurologically devastating injury without brain death. Here, decisions can be more difficult, and electing to continue or to withdraw treatment much more problematic. Inconsistent communication and support between medical staff members and families plays a role. A new field, neuropalliative care, seeks to focus “on outcomes important to patients and families” and “to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.”

Not long ago, my surgical partner performed late-night emergency surgery on a young woman who had also been shot in the head. This time, the bullet’s violent impact exploded her skull. It traversed both hemispheres of her brain, including her basal ganglia and thalamus (deep brain regions affecting consciousness). Injury to these areas has a dismal prognosis, as do penetrating injuries to both sides of the brain. But, unlike the first patient with a single bullet hole and no exit wound, the initial explosion decompressed her brain, accommodating swelling rather than producing dangerously high pressures as occurred in the first patient, which led to brain herniation and his death.

This young woman lay in her I.C.U. bed, breathing with the aid of a mechanical ventilator, turned by nurses every two hours, fed through a thin tube passed through her nose into her stomach: never conscious, never moving spontaneously, seemingly unaware of her surroundings. She was likely to remain this way for the rest of her life.

The treating physicians and nurses agreed on the patient’s prognosis, and on a consistent message everyone could support. We met with the family at the young woman’s bedside and later telephoned out-of-state family members. The I.C.U. director and I spoke about difficult medical decisions we’d had to make regarding our own family members, and we asked them what she might want, since they were representing her interests and acting on her behalf. I explained her injury and the likelihood that she would never recover: Together, family members and neuro-I.C.U. caregivers agreed to transition the woman to comfort care and let her die.

Two years ago, I too was on the family side of this situation after my brother-in-law Pat collapsed with a brain hemorrhage from a ruptured cerebral aneurysm. As the only physician in the family and Pat’s legally designated health care power of attorney, I made his medical decisions and communicated with the rest of his family, including his two sons, who were then 16 and 18 years old. This was all the more difficult because a year previously, his wife, my sister Victoria, had died of leukemia, leaving Pat as their children’s sole caregiver.

Pat was taken by ambulance to U.C.L.A. Medical Center in Westwood. Before flying to Los Angeles, I agreed to surgical clipping of his ruptured aneurysm. Technically, surgery went well, but Pat never regained consciousness. While never brain-dead, he remained deeply comatose. His neurosurgeon, Gregory Lekovic, was supportive: he and I discussed a timeline at our first meeting. He recommended giving Pat at least a week to improve. If he did not, Dr. Lekovic counseled us not to allow a tracheostomy and G-tube placement (permanent surgical routes for breathing and nutrition), and opt instead to withdraw treatment. This would be the clear stopping point. Dr. Lekovic and I worried it would be difficult to back off after those procedures had occurred.

Throughout the following week, Pat did not improve at all neurologically. Everyone hoped he was rallying. I felt like a wet blanket, continually challenging the other doctors’ enthusiasm. Understanding his condition and having legal authority to make decisions allowed me to keep a clear view of care objectives, but it didn’t make the situation easier on a personal level. Pat’s children had only begun coming to terms with losing their mother and were now confronting the possible loss of their father. But delaying this loss wouldn’t justify his continued existence without quality of life. He would have hated being comatose or severely impaired in a nursing home, unable to relate to his family or to care for his own basic needs such as eating or toileting, and had feared burdening his family.

The likelihood was that Pat would never regain consciousness. Yet on the morning we had planned to withdraw treatment, one of the neuro-I.C.U. specialists presented a scenario in which Pat might wake up, become able to walk with assistance and participate with his family. When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome.

Then Dr. Lekovic, speaking plainly, told us that for himself or his family member, he would make the decision to end treatment. He seemed genuinely sad. Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty. In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.

My nephews appreciated the truth when I explained their father’s prognosis. While they were devastated at the prospect of losing him, honesty and inclusion in decision-making were important in helping them move forward with their lives.

Even with my training, I wondered if I was making the right decisions. Each affected family faces similar burdens. We all need better help wrestling with decisions in neurologically devastated patients, both through improved communication and the development of neuropalliative services.

Those of us in the medical profession cannot allow ourselves to focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life. We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.

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