In the I.C.U., Dying Sometimes Feels Like a Choice

By By Daniela J. Lamas

My patient’s wife had just one question: Was her husband dying?

She knew that he was still on the ventilator even after all these weeks, his lungs too sick and his body too weak to breathe on his own. That he still needed a continuous dialysis machine to do the work of his kidneys. That he had yet to wake up in any meaningful way, though his brain scans showed nothing amiss. That it had been more than 50 days since he entered the hospital and we needed to talk about what would come next.

But when she stood there at the bedside, her husband looked much the same to her as he had a week ago, much the same as he might look next week if we continued to push forward. And she had to ask: Why did we need to have this conversation today? Was her husband dying?

You might think this is an easy question to answer. And yet here in the intensive care unit, it is not. Our medicines and machines extend the lives of patients who would otherwise have died. But what happens when it becomes clear that a patient is not actively dying, but not getting better either? How do doctors and family members navigate death when it is not imminent and unavoidable, but is instead a decision?

During my medical training, death happened in one of two ways. It was either a moment of crisis, doctors rushing into a room, all sound and fury and chest compressions for minutes that felt like hours. Or it was something quieter, entirely divorced from machines, family gathered for the last breaths when the lungs were failing, or the cancer had spread too far.

But there’s a third form that dying takes, when it becomes clear that the life that we can offer is not one that would be acceptable to the patient. It is a death that is made imminent only by the withdrawal of medicines and machines — a death that we plan for. 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.

A few months ago, I took care of a cancer patient in her 70s who had been intubated because of a flare-up of an underlying lung disease. In the moments before the anesthesiologists put her to sleep and placed the breathing tube down her throat, she had given her son instructions: 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. Her cancer was progressing, and that was not the way she wanted to spend the last year of her life.

I told her family that we would continue our intensive interventions for two weeks, a “time-limited trial of critical care,” as we often call it. If my patient was not breathing on her own at that point, then she never would never be — not without a trach and protracted rehab, a best-case scenario that she would find unacceptable. A week passed. She improved a bit and her family let themselves hope, only to be devastated days later when she worsened again.

Then, the day before the time-limited trial was to end, my patient’s son and daughter took me aside. They could not bring themselves to leave that night and return the next morning to hear the words that now seemed inevitable. If their mother was not going to improve, they wanted to take her off the machines that evening. The next day was her grandson’s birthday. She would not have wanted the little boy’s celebration to be forever intertwined with the sadness of her death. Perhaps they could wait until the day after the birthday, but that might only prolong their mother’s suffering.

There is something uncomfortable about these conversations, where it feels as though we are asking family members to plan the end of a life. 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. What they are asking, really, is how their loved one will die.

As gently as I can, 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. I tell them that the bedside nurse will give other meds, often morphine or a similar drug, to make sure that their loved one is not in 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.

We even have a term for this balance, the “principle of double effect” — as doctors, we accept the risk of a negative consequence like hastening death, so long as our intended outcome is to help the patient by alleviating symptoms. The pain-relieving meds that we administer do not themselves cause death; instead they ensure that our patients are as comfortable as they can be while dying from their underlying disease.

Some family members ask us to stop everything all at once. Others ask for a longer process, to stop one medicine and then another. Someone recently asked the nurse to let every medication run out and not to replace the IV bags. Some ask us to remove the breathing tube, others do not. I am often surprised to what extent people have ideas about what feels right to them, about how the unimaginable should play out. Sometimes there is music. Jerry Garcia. Beethoven. For others, this is all one decision too many, and they sit in silence.

A resident doctor in training came to me recently after one such family meeting, worried that by telling a family that their loved one was dying, he had made it true. If we define dying solely by physiology, by a falling blood pressure or oxygen level, then perhaps that concern is valid. But if we broaden our definition, if we think of dying in the intensive care unit as something that begins when an acceptable outcome is no longer possible, then we are acknowledging the inevitable.

Which is what I told my patient’s wife that day outside his room. We had given her husband every chance to rebound, to show us that he could make it through, but the insults his body faced were too great. We could press on, but to what end? He would never make it home, never be able to do the things that made his life worth living.

She was right, the timing of this conversation was, in a way, arbitrary. Had I been dealing with a patient in extremis, I might not have stopped her outside the room that day. But once we recognized the reality of her husband’s medical condition, what choice was there?

That night, my patient’s wife made the decision to take him off the ventilator. The nurses titrated the pain medications that ran through his veins as she held vigil at his bedside. And after weeks of critical care limbo, the answer to her question was finally clear. Her husband was dying.

Complete Article HERE!

After death, you’re aware that you’ve died, say scientists

Your subjective experience might not end the moment your heart stops, research on near-death experiences suggests.

By Philip Perry

Time of death is considered when a person has gone into cardiac arrest, which is the cessation of the electrical impulse that drives the heartbeat. As a result, the heart locks up. This moment when the heart stops is considered by medical professionals to be the clearest indication that someone has died.

But what happens inside our mind during this process? Does death immediately overtake our subjective experience or does it slowly creep in?

Scientists have studied near-death experiences (NDEs) in an attempt to gain insights into how death overcomes the brain. What they’ve found is remarkable: A surge of electricity enters the brain moments before brain death. One 2013 study, which examined electrical signals inside the heads of rats, found that the rodents entered a hyper-alert state just before death.

Some scientists are beginning to think that NDEs are caused by reduced blood flow, coupled with abnormal electrical behavior inside the brain. So, the stereotypical tunnel of white light might derive from a surge in neural activity. Dr. Sam Parnia is the director of critical care and resuscitation research, at NYU Langone School of Medicine, in New York City. He and colleagues have investigated exactly how the brain dies.

Our cerebral cortex is likely active 2–20 seconds after cardiac arrest.

In previous work, Dr. Parnia has conducted animal studies looking at the moments before and after death. He’s also investigated near-death experiences. “Many times, those who have had such experiences talk about floating around the room and being aware of the medical team working on their body,” Dr. Parnia told Live Science. “They’ll describe watching doctors and nurses working and they’ll describe having awareness of full conversations, of visual things that were going on, that would otherwise not be known to them.”

Medical staff confirm this, he said. But how could people who were technically dead be cognizant of what’s happening around them? Even after our breathing and heartbeat stop, we remain conscious for about two to 20 seconds, Dr. Parnia says. That’s how long the cerebral cortex is thought to last without oxygen. This is the thinking and decision-making part of the brain. It’s also responsible for deciphering the information gathered from our senses.

According to Dr. Parnia, during this period, “You lose all your brain stem reflexes — your gag reflex, your pupil reflex, all that is gone.” Brain waves from the cerebral cortex soon become undetectable. Even so, it can take hours for our thinking organ to fully shut down.

Usually, when the heart stops beating, someone performs CPR (cardiopulmonary resuscitation). This will provide about 15% of the oxygen needed to perform normal brain function. “If you manage to restart the heart, which is what CPR attempts to do, you’ll gradually start to get the brain functioning again,” Dr. Parnia said. “The longer you’re doing CPR, those brain cell death pathways are still happening — they’re just happening at a slightly slower rate.”

Other research from Dr. Parnia and his colleagues examined the large numbers of Europeans and Americans who have experienced cardiac arrest and survived. “In the same way that a group of researchers might be studying the qualitative nature of the human experience of ‘love,’” he said, “we’re trying to understand the exact features that people experience when they go through death, because we understand that this is going to reflect the universal experience we’re all going to have when we die.”

One of the objectives is to observe how the brain acts and reacts during cardiac arrest, throughout both the processes of death and revival. How much oxygen exactly does it take to reboot the brain? How is the brain affected after revival? Learning where the lines are drawn might improve resuscitation techniques, which could save countless lives per year.

“At the same time, we also study the human mind and consciousness in the context of death,” Dr. Parnia said, “to understand whether consciousness becomes annihilated or whether it continues after you’ve died for some period of time — and how that relates to what’s happening inside the brain in real time.”

Complete Article HERE!


— What It Is and What Causes It

By Mandy Baker

Thanatophobia is the fear of death or the dying process. Death or dying is a typical concern in society. However, those with thanatophobia worry about it more often to the extent it affects their daily lives. This article will define thanatophobia. It will also discuss the symptoms, causes, and treatments for this phobia.

What is thanatophobia?

The American Psychological Association defines thanatophobia as a persistent and irrational fear of death or dying. This fear can either focus on yourself or the death of loved ones.

Studies have shown that people with older parents often project their own fears of death onto them. However, the same study showed that older parents are less likely to have this fear themselves. Thanatophobia can affect anyone. However, it does appear to peak in middle age and then taper off in older adulthood.

The fear of death and dying is a natural presence in life. However, those with thanatophobia experience it more severely. People with phobias typically avoid situations that might cause them fear or anxiety. Research has shown that thanatophobia may increase a person’s avoidance when it comes to social anxiety.

What are the symptoms of thanatophobia?

The main symptom of thanatophobia is the psychological fear of death and dying. It is more than just your typical worry about death — a phobia generally affects your day-to-day life.

Many people with a phobia, such as thanatophobia, experience panic attacks. Along with an overwhelming feeling of anxiety, panic attacks tend to also include physical symptoms, which can include:

If you are experiencing thanatophobia, you may also find that you avoid certain social situations that cause you anxiety.

Learn more about panic attacks and anxiety.

What causes thanatophobia?

Health experts do not know what precisely causes thanatophobia. However, many believe that unresolved psychological or physical distress can play a major role in the development of death anxiety.

Thanatophobia appears to be more common in those who have:

  • low self-esteem
  • no religious beliefs
  • health issues
  • no sense of fulfillment in their life
  • little to no intimacy with loved ones
  • little to no determination to overcome difficulties in life

Other factors that may contribute to the development of thanatophobia are anxiety, depressive symptoms, and your belief about what happens after death.

How do you treat thanatophobia?

Though many phobias are curable, there is no one treatment for them. However, treatment typically includes a combination of:

  • therapy
  • medication
  • self-help techniques


Psychotherapy is typically an effective treatment for phobias. One of the main types of psychotherapy that mental healthcare professionals use to treat phobias is cognitive behavioral therapy (CBT).

CBT is a type of therapy that focuses on helping you to change your behaviors and the way you think. It can help you learn and develop ways to help manage your phobia. One type of CBT, exposure therapy, can help manage phobias by gradually increasing the level of exposure to your fear. This then allows you to gain control over your phobia.


Healthcare professionals do not always recommend medication to treat phobias. However, your doctor may prescribe them on a short-term basis to treat the anxiety or other symptoms that typically accompany phobias.

Medications that your doctor may recommend include:

  • antidepressants
  • tranquilizers
  • beta-blockers


Certain lifestyle changes may help you manage phobia symptoms, such as panic attacks. These changes may include:

  • getting regular exercise
  • eating regularly
  • eating a nutritious diet
  • getting enough sleep
  • reducing your intake of caffeine or other stimulants

Other self-help techniques include:

  • Relaxation techniques: Involve physical exercises that can help you relax and control your breathing.
  • Visualization: This combines relaxation techniques with a mental visualization of how you can successfully manage situations that cause you anxiety.
  • Self-help groups: This is a way to meet others with similar experiences, where you can share ways of coping with your phobias.


Thanatophobia is an intense and persistent fear of death or the process of dying. Typically, the anxiety that comes from a phobia will affect your day-to-day life.

People with phobias often experience panic attacks and avoid situations that may cause them anxiety.

Thanatophobia is treatable with a combination of therapy and self-help techniques. Your doctor may also recommend medications to help you manage symptoms such as anxiety.

If you feel you are experiencing thanatophobia that is affecting your daily life, contact your doctor or mental healthcare professional.

Complete Article HERE!

Advance Directives

— What You Need To Know

By Jennifer Lagemann

Only one in three U.S. adults has an official plan in place for end-of-life care, according to research in Life Affairs. Formalizing these details when you’re able to do so can make a world of difference for you and your loved ones down the line.

Read on to learn about advance directives, including what they are, why they’re important, what challenges may arise and how to ensure your or your loved one’s wishes are in writing so they’re more likely to be honored if and when the time comes.

Advance directives are written instructions regarding what a person wants in terms of health treatment and care should they lose the capacity to voice these desires. Samantha Winemaker, M.D., a palliative care physician and co-host of the Waiting Room Revolution podcast, defines advance directives as “an expression of someone’s values and wishes based on what’s most important to them in their life.”

Advance directives were first introduced in the U.S. in 1967 as a component of advance care planning. Reaching a step beyond informed consent, they help people prepare for inevitable and unpredictable life events that can impact a person’s ability to direct their own care. These documents provide space in which patients can wield more power and autonomy in shaping their health care experiences, particularly as it relates to end-of-life care, says Dr. Winemaker.

Types of Advance Directives

There are several types of advance directives, including (but not limited to) living wills, health care powers of attorney, do-not-resuscitate (DNR) orders and physician orders for life-saving treatment, says Ferdinando Mirarchi, D.O., chief medical officer of the Institute on HealthCare Directives.

Physician orders for life-saving treatment (POLSTs) outline a plan of end-of-life care that reflects the patient’s care preferences as well as their health care provider’s judgment based on a medical evaluation. This advance directive is only valid once agreed upon and signed by both parties.

A living will is a written document that outlines a person’s health care wishes for end-of-life care in the event that something prevents them from voicing their own values, wants, wishes and needs for whatever reason and they cannot make such decisions on their own. Living wills typically tell health care providers what treatments the person does or doesn’t want when the individual no longer has the competency to make such decisions, and some include religious preferences as well.

“They are [written] documents that provide a way to express your wishes if you can’t speak for yourself,” adds Dr. Mirarchi.

A health care power of attorney, also called a health care proxy or health care agent, is someone a person appoints or designates to advocate for them in the event that they can no longer advocate for themselves.

The importance of choosing a power of attorney cannot be overstated. Dr. Winemaker describes the role as a culmination of all the previous conversations they’ve had with the person about what they value and the tradeoffs they’re willing to make. They need to pick what the person they’re advocating for would want and put their wishes in the context of the given situation. A power of attorney is only as good as how well they know their role, says Dr. Winemaker.

Do-not-resuscitate (DNR) orders are medical orders written by a doctor explicitly instructing health care providers not to use cardiopulmonary resuscitation (CPR) should the patient’s breathing stop or heart stop beating. “Depending on the state, these orders can also be written as a cardiopulmonary arrest,” Dr. Mirarchi.

Various guidelines for each of these advance directive documents are outlined in state laws and often templated by specialized attorneys. You may also create similar documents on your own. The more specific a person is with the information they include in an advance directive, the more closely their wishes will be followed when the time comes.

Why Are Advance Directives Important?

Advance directives are essential for patient autonomy. They empower a person to have their wishes honored in the event that they’re no longer able to speak for themselves.

What’s more, the use of advance directives is linked to higher utilization rates of palliative care (health care for people living with a serious illness), reduced stress toward end of life, improved communication between health care teams and patients’ families, and reduced health care costs, according to research in the Journal of Gerontological Nursing.

It’s important to understand the broader context of how advance directives play a role in how people experience health care. “We have to [acknowledge] that 90% of us will end up with some condition that will result in multiple [health care] decisions,” says Dr. Winemaker. “We have to [be ready to] make [these] decisions for ourselves and [others]. It’s not ‘if’— it’s ‘when.’”

Coordinate with your or your loved one’s health care team to keep time on your side, advises Dr. Winemaker. “Don’t put yourself at a disadvantage or work in crisis mode. This is a part of life, and just like with everything else, planning is the best medicine,” she says.

Dr. Winemaker also explains that it’s important for patients to play a more active, consumerist role in their health appointments by expressing person-centered requests.

“The health care system is all about bi-directional sharing—it helps diagnose an illness and treat the illness,” she says. Often, the goal is to keep people going for as long as possible and keep the illness quiet as long as possible. However, quality of life is often superseded by the pursuit of longevity. So, it’s crucial to be open, honest and proactive with your care team so they can make recommendations and treatment plans that best suit your specific situation and personal preferences.

In fact, the point of an advance directive and participating in advance care planning is to go against the health care conveyor belt—you won’t get what you need unless you’re vocal about your wishes, says Dr. Winemaker. Your treatment plan should reflect who you are.

When Should You Make Advance Directives?

There’s no “best” time to file advance directives, but Dr. Winemaker says the sooner they’re in place, the better. And remember care planning is not a one-off conversation, but rather a series of discussions with your loved ones and yourself about what suits you best.

“When you’re healthy, reflect on what movies you watch on Netflix,” suggests Dr. Winemaker. “Think of ‘The Notebook’ or ‘Still Alice.’ What would you do in either of those situations? Think of yourself in multiple scenarios and what you’d want, and share those [details] with people around you as soon as possible.

Meanwhile, there are certain points in life when it can be advantageous to update advance directives, says Dr. Winemaker, which include (but aren’t limited to):

  • When you become a partner or spouse
  • When you become a parent
  • When you lose someone important to you
  • When your contact information (telephone number, physical address, email address, etc.) changes
  • When your selected health care power of attorney is deceased or you want to select another person in their place

Generally, advance care plans or advance directives should be updated and reviewed annually similar to how you schedule an annual health care appointment with your primary care physician.

When Are Advance Directives Implemented?

Each type of advance directive serves a unique purpose and is implemented in certain situations.

POLSTs are implemented once both the patient and their health care provider agree and sign off on a medical treatment plan as it relates to the person’s current health status.

Living wills go into effect when the person enters any of the conditions listed in their living will document. At this point, the document becomes operative and is followed by all care team members, explains Dr. Mirarchi.

Meanwhile, a health care power of attorney can be utilized at any point in a person’s life when they aren’t able to make a health decision for themselves, be it due to an acute health emergency or progression of a chronic illness.

And DNR orders become active when a person stops breathing or their heart stops beating, at which time the care team isn’t allowed to perform CPR to resuscitate them.

What Happens if You Don’t Have Advance Directives?

Without advance directives, the specific outcomes of your care are more uncertain. “From a health care perspective, there are times when the health care team can act in an emergency in the patient’s best interest, but that’s reactive care—not proactive care,” says Dr. Winemaker. You or your loved one likely wants to be in a position of control over their care, which requires having a plan.

“If it’s not an emergency situation, [the health care team has] to try to find people who are in the person’s life. Ultimately, if a decision needs to be made, they can also go to a higher-level attorney or representative,” explains Dr. Winemaker. There are various contacts the health care system can use to make a legal decision on a patient’s behalf.

Unaware of what a patient wants, the health care team and family members they’re able to contact are often left to make decisions based on what they think they know about the patient. Naturally, a lack of advance directives in such circumstances can cause undue stress and burden for loved ones who, even with good intentions, might make the wrong decisions for the person in need of care.

Common Challenges With Advance Directives

According to Dr. Mirarchi, one common challenge with advance directives is something he refers to as “medical stranger danger.” Advance directives are documents often written with the help of attorneys and then interpreted by health care professionals, explains Dr. Mirarchi, so it’s not surprising that misunderstandings that can turn into medical errors occur. More specifically, his research shows advance directives can “get prematurely misinterpreted as a DNR order, and DNR orders can get misinterpreted as do-not-treat orders.” However, he adds that while most people in medicine are “medical strangers” to you, your doctors are often people who actually know you well enough to make informed decisions as it pertains to your care.

The goal is for the health care team to make decisions that honor what a person says they want, says Dr. Winemaker. There’s a process to override someone if they’re not making a fit or good decision, but you typically don’t have to escalate a situation to that level. And often, a person’s decision is coming from a good place.

There’s no time like the present to get started on your advance directives if you haven’t already— and encourage your loved ones to do the same. Once you have them in place, remember to review them at regular intervals as well to make sure they still represent your wishes and desires.

Complete Article HERE!

Understanding the Physical Symptoms of Grief

Despite having many common features, the experience of grief is unique to each person. Its symptoms are not just emotional and mental. They can also include physical effects on your body.

Researchers have made clear connections between grief and certain bodily changes, including effects on heart health, sleep patterns, moods, and more.

Keep reading to find out the mind-body connections between grief and physical symptoms. We’ll overview research identifying what health outcomes grieving can cause and what steps you can take to cope.

Grief can have a profound effect on your mental and physical health. Research from 2019 emphasized that grief can cause cardiovascular issues and premature death in the months after a spouse has died.

Here’s a look at some of the most-studied physical changes grief can cause.

Grief has been shown to cause immune system dysfunction in some people, raising general inflammation and the risk of infections.

According to a 2019 reviewTrusted Source of research, grieving people have lower levels of certain immune system cells, including natural killer cells and lymphocytes. They also have higher levels of inflammatory markers (including IL-6 and IL-1), which can further worsen the likelihood of illness or infection.

Vaccines may also be less effective when administered to grieving people, whose bodies don’t seem to create as many antibodies to respond to infections.

Experiencing grief shares many symptoms with chronic mental health conditions like anxiety and depression. For people with a mood or anxiety disorder, grieving can worsen existing symptoms of worry or hopelessness.

Grief can trigger powerful emotions, which include:

  • anger
  • anxiety
  • helplessness
  • hopelessness
  • sadness

Moods have direct physical outcomes on your body. Depression and anxiety can cause fatigue and social withdrawal, and result in spending less time on activities you enjoy. This can lead to weight changes, poor sleep hygiene, and chronic pain, among other effects.

If you have a diagnosed mental health condition, it’s very important to keep following your treatment plan when grieving. Continuing to go to therapy or support groups, taking medication, or participating in any other ongoing care is essential to maintaining your health and stability while processing a loss.

Experiencing grief is also associated with an increased riskTrusted Source of suicide depending on a loved one’s cause of death. This is especially true if you recently lost someone to suicide. Know you’re not alone, and help is available.

Grieving people may notice complications with both sleep quantity and quality. This may depend on the severity of a person’s grief, which is highly personal and hard to quantify.

Researchers have several theoriesTrusted Source as to why grieving impairs sleep. One potential explanation is that people are more likely to think of their loved ones at night before bed, or dream about them.

Problems sleeping can also cause further physical symptoms of grief. When you don’t get sufficient sleep, you usually experience less energy during the day from fatigue. You may have trouble focusing or headaches.

Grief and depression aren’t the only things that can cause fatigue. Learn more about potential causes of daytime fatigue.

Researchers studying the connections between psychological and physical pain found similarities in certain (but not all) areas of the brain. They theorized that it’s possible for activation of psychological pain pathways to increase the experience of physical pain.

Grief can also raise the riskTrusted Source of chest pain, possibly from the release of cortisol, the stress hormone. Cortisol can cause blood vessels to constrict, slowing or stopping blood flow, which can lead to chest pain.

Grieving can cause a number of abdominal-related symptoms.

These include:

These factors can then affect other aspects of your health, including your immune system and sleep. You can experience reduced energy levels from nutrient and vitamin deficiencies.

Depression and anxiety, which often accompany grief, can also cause disordered eating and gastrointestinal distress in some people. There’s a growing body of research on the brain-gut pathway and the way psychological factors may impact our gut.

Severe emotional and physical stress can trigger a condition called Takotsubo cardiomyopathy, also known as “broken heart syndrome.”

The condition can cause your heart’s left ventricle to become weaker, mimicking the symptoms of a heart attack (myocardial infarction). This type of cardiomyopathy is usually temporary and resolves within a month.

However, it’s also possibleTrusted Source to have a heart attack as a result of a severe grief response. Grief increases blood pressure and heart rate, similar to a panic attack. These effects can tighten blood vessels and heighten the risks that plaque will break off and cause a heart attack.

The stress from grief can also trigger atrial fibrillation, an irregular heart rhythm.

If you believe you or a loved one is experiencing symptoms of a heart attack, such as chest pain, shortness of breath, and lightheadedness, seek emergency assistance immediately.

The grief experience can change shape and evolve unpredictably. You may have days when you feel stable and optimistic, and other days when the grief feels overwhelming.

In addition to maintaining treatment for any underlying mental or physical health conditions, practicing proper self-care can help you cope with loss.

Consider adopting these self-care practices:

  • Go to bed at the same time every night and follow a bedtime routine that brings you calm. This could include taking a bath before bed, listening to your favorite music, or refraining from using electronics after a certain time of night.
  • Eat a balanced diet.
  • Get in regular physical activity to the extent you are able. This could be structured exercise, going for walks, or even playing with a pet.
  • Find a hobby you can enjoy that helps relieve stress. This could include creative pursuits like art and music, volunteering in your community, or practicing meditation.

Remember, grieving takes time. Some experts even recommend setting aside a specific time each day to reflect and grieve. Doing so may give you a feeling of control when grief can otherwise make you feel out of control.

Grief is a part of life, and everyone experiences it differently. We can experience grief over a death, a medical diagnosis, or the ending of a relationship.

Grief has both significant and quantifiable mental and physical effects on the body. In addition to psychological symptoms of depression and anxiety, grief can cause sleep problems, chest pain, and gastrointestinal issues. In some cases, grief can increase the risk of heart attack and suicide.

Give yourself grace when grieving. Seek emotional support, whether it’s family and friends, attending a support group, or talking with a therapist. Prioritize eating a balanced diet and getting some form of physical activity.

For many people, grief is a lifelong process that has unpredictable ups and downs. However, it’s entirely possible to achieve acceptance and move forward, even as you continue to hold space for your grief.

Complete Article HERE!

Understanding and Recognizing Terminal Restlessness

Terminal restlessness is the term for a set of symptoms that can happen at the end of a person’s life. These symptoms can include agitation, emotional distress, and confusion.

These symptoms can sometimes be accompanied by more severe psychological symptoms, which are generally known as delirium.

Terminal restlessness can be caused by a number of things associated with dying, including the medications used to relieve symptoms, organ failure, and emotional distress.

Read on to learn how to recognize the symptoms of terminal restlessness and how to help someone you love cope with the physical, mental, and emotional experiences that may come at the end of life.

Terminal restlessness can look different in each person it affects. Some people can become much calmer than they usually are, while others might grow aggressive or have mood swings.

Common symptoms of terminal restlessness can include:

People with terminal restlessness may also demonstrate unusual behaviors. These behaviors often take place when the person is in an agitated state. Examples include:

  • pulling on intravenous tubes (IVs)
  • pulling off clothing
  • pulling and tugging on bedsheets
  • fighting with or insulting loved ones or caretakers
  • making accusations based on events that might not have occurred
  • searching or asking for items they don’t actually want
  • rejecting physical touch and affection from family and other loved ones

People who are experiencing terminal restlessness can also experience delirium, which can cause extreme confusion along with other symptoms, such as:

Terminal restlessness happens at the end of life and doesn’t necessarily have a specific cause.

The process of dying causes physical changes to the body and is often mentally and emotionally overwhelming. This can lead to terminal restlessness and delirium.

Some medications prescribed to help treat the pain and symptoms associated with certain medical conditions can also lead to restlessness and delirium.

Some of the most common causes of terminal restlessness include:

  • Chemotherapy: Chemotherapy kills cancer cells, but it’s hard on the rest of the body and can lead to restlessness in people approaching the end of life.
  • Pain medications: Opioids, steroids, and other pain medications are often prescribed to help reduce pain and give comfort during end-of-life care. But they can also increase the risk of delirium. This risk increases if someone is experiencing organ failure.
  • Organ failure: Organ failure can make it impossible for the body to carry out basic functions. This can change how brain chemistry works and can lead to terminal restlessness and delirium.
  • Pain: It can be difficult to manage pain effectively at the end of life. Severe pain that isn’t well controlled can increase the riskTrusted Source of terminal restlessness.
  • Medical difficulties: It’s common to experience medical difficulties like anemia, infections, fevers, or dehydration at the end of life. These can all affect how the brain works and lead to terminal restlessness.
  • Urinary retention and constipation: At the end of life, the muscles that control urination and bowel movements can weaken and fail to function properly. This can lead to constipation and urinary retention. Both can cause pain and lead to terminal restlessness.
  • The emotions of dying: Dying carries a heavy emotional toll for everyone. It’s common to experience grief, stress, fear, and other strong emotions. This distress can lead to terminal restlessness.

The management of terminal restlessness and delirium depends on the person and their symptoms.

Some management options include:

  • switching medications or doses of medications
  • talking with someone who’s experienced in end-of-life care and counseling, such as hospice social workers or grief counselors
  • consulting with spiritual leaders, such as priests, ministers, rabbis, or imams

Terminal restlessness or delirium can sometimes lead to behaviors that are harmful to the person or to others. In these cases, additional treatments like antipsychotic medications can ease agitation.

Doctors will discuss end-of-life treatment plans with family and caretakers, to make sure everyone understands the options.

End-of-life care includes caring for a person’s physical, mental, and emotional needs.

Services such as home healthcare or hospice can help family or caretakers provide the right care to their loved ones. Each person’s exact needs will differ — but some general tips for end-of-life care include:

  • Look for ways to ensure your loved one isn’t in any pain:Speak to a doctor and medical team about prescriptions and about any signs of pain you notice.
  • Keep tasks simple: It’s normal for people to feel tired during this time. Make tasks like going to the bathroom, eating, and other daily needs as simple and easy as possible.
  • Provide blankets, fans, cool washcloths, and other ways to control the temperature:Look for signs that your loved one is too hot or too cold. They may not be able to easily express their discomfort, so check for hands and feet that are cool or hot to the touch, and pay attention if they’re repeatedly tugging on a blanket.
  • Check for comfortable breathing: It’s common to have trouble breathing at the end of life. Raise the head of the bed, turn on a humidifier, or move into a position that makes breathing easier.
  • Be aware that your loved one might stop eating: Help your loved one eat and speak to a doctor about medications that help with nausea and vomiting. Remember that as they get closer to death, it’s normal and OK for someone to simply stop eating.
  • Keep skin moisturized with petroleum jelly and other alcohol-free lotions: Help protect your loved one’s skin by rolling them over in bed every couple of hours. This will keep them from laying on one side for too long and help prevent bedsores.
  • Talk with your loved one about their emotions: Dying can be an overwhelming emotional experience. Being a supportive listener can be an incredible help. Ask if your loved one would like to speak to a professional, such as a counselor or social worker.
  • Talk with your loved one’s care team if you notice any mood or behavior changes: It’s normal to have a lot of emotions about dying. But if your loved one seems especially depressed, anxious, or distressed, talk with their care team. Mental health professionals and medications can help.
  • Offer opportunities to connect with faith:Spiritual practices are important to many people at the end of their life. It can help to have religious texts or music available. A visit from a religious leader can also bring comfort.
  • Offer companionship: Simply not being alone can often make a big difference. Try spending time with your loved one by talking, watching favorite films, reminiscing, holding their hand, or listening to music.
  • Continue to talk:People may be able to hear even after they stop responding. That’s why doctors often encourage caretakers, family members, and friends to have final conversations with people who are dying, even if those people can’t respond.

It can be difficult to watch a loved one while they’re dying, and terminal restlessness can be especially challenging and overwhelming.

That’s why it’s so important for the caregivers and family members of people who are experiencing terminal restlessness to seek support. It can help to:

  • Turn to other family members: Often, even phone calls with friends can help take some of the weight off of your shoulders. Friends and family can also make meals, run errands, and take care of other tasks for you.
  • Take a break: Make arrangements to take a walk, go to the gym, or do anything else that’s out of your home and on your own for an hour or so. This can help clear your head and relieve your stress.
  • Look into respite care: If you need a longer break, respite care can be the answer. Respite care can help make sure your loved one is looked after for hours, days, or even months.
  • Seek grief counseling: Grief counselors are professionals who can help you process your emotions. Your insurance company might cover this kind of counseling. If not, there are ways to find low cost services.
  • Look into peer support or online group support:Peer and online support groups can help you connect with other people who are facing the same challenges as you.
  • Consider hospice care: Hospice care can provide nursing, caretaking, medical, mental health, social work, and other services to terminally ill people. Hospice is often covered by Medicaid, and most hospice providers also offer services such as grief counseling for family members.
  • See if a nearby community center, nonprofit, or religious organization has resources: Many churches, senior centers, community nonprofits, and other organizations have outreach programs that can help provide hot meals, housekeeping, and other services while you care for your loved one.

It can be difficult for family members and caretakers to watch their loved ones experience the symptoms of terminal restlessness.

If you or a loved one is terminally ill, make sure to take the time to care for yourself. Grief counseling, peer counseling, and other supportive services can help make the end of life less overwhelming and help caretakers practice self-care and avoid burnout.

Complete Article HERE!

Supporting patient choice at end of life

By Norman Nasser, Nadia J. Pruett, Jason Sawyer and Amy E. Nolen

Monika was a 77-year-old mother of 2 and grandmother of 4 who lived for many years with mental and physical health challenges. She had bipolar disorder, which was well managed by a psychiatrist in her final years of life.

Monika was a warm and loving person who cared deeply for her family, friends, caregivers and dog, Trixie. She loved music and gardening, and enjoyed many foods, especially sweets.

In 1996, Monika had attempted suicide, which had resulted in long-term paraplegia and associated chronic health problems, including progressive and chronic lower extremity pain. She had received numerous treatments over several years, including different classes of drugs (antispasmodics, nonsteroidal anti-inflammatory drugs, tricyclic antidepressants, anticonvulsants and opioids), medical cannabis, cortisone injections, injections of botulinum toxin and consultations with physiotherapists and physiatrists. Despite this, her pain escalated until she could no longer safely remain at home because of functional impairment from pain. She presented to the emergency department and was admitted to hospital.

In hospital, medical options for pain management were ineffective at achieving an acceptable degree of pain relief or resulted in intolerable side effects. These included trials of intravenous ketamine, lidocaine and suboxone.

Monika, with the support of her children, requested medical assistance in dying (MAiD). She was found eligible for MAiD under Bill C-7, an amendment to Canada’s assisted dying legislation that was passed in March 2021 and removed the previous requirement that a person’s natural death must be reasonably foreseeable.1 Bill C-7 includes several safeguards, including a 90-day period between initial assessment for eligibility and provision of MAiD. However, if there is concern that the patient might imminently lose capacity to consent, that period can be shortened.

During her month-long hospital admission, Monika had multi-factorial delirium that her clinicians felt placed her at risk for loss of capacity to consent to MAiD, and they shortened the 90-day assessment period.

Son’s perspective

I remember my mom as being very loving and supportive when I was a child. I relied on her warmth and wonderful personality.

At times, the last 26 years have been very difficult for us; my mom’s mental health struggles and physical deterioration often made day-to-day living incredibly difficult for her. Regardless, she felt that her quality of life was better than that of many people suffering around the world. She didn’t take life for granted.

Monika’s pain became terrible and progressive. Over the last few months of her life, she called me many times a week, crying in anguish. Regardless of what was tried — yet another specialist, medication or treatment — nothing worked. I felt helpless. My sister Nadia and I were worried that she would overdose on pain medications. I couldn’t imagine her going through that alone.

My mom decided to apply for MAiD, with our full support. When she was stressed or in pain, it was challenging for her to communicate effectively, so we were worried about how she would be assessed by her health care team, given the COVID-19 restrictions.

In hospital, the palliative care team involved the acute pain service and were incredibly supportive and compassionate. We spoke almost daily, and my mind was at ease that my mom was getting the best care possible. The compassion and patience of everyone made the experience tolerable; I felt that they were advocating for her. However, the pain persisted in spite of everything that was attempted.

When the planned waiting period of 3 months was suddenly shortened to only 48 hours, I understood. Why spend time saying goodbye when that time was spent struggling in pain? Those 2 days were a blur to me. Surprisingly, my mom had a sound sleep for the first time in months. Why? Was it the partial effectiveness of the analgesics, was it the onset of delirium or was it from the calm that came with knowing that her suffering would finally end

The last few hours came and went too quickly. Nadia, my mom and I laughed together; we cried, music played and my mom sang an old German song that I had not heard in decades. I did not say “Goodbye” or “I love you” in those brief, final seconds, but our bond was as strong as ever. Her passing was so gentle. It was impossibly difficult to be there, but I still would not change anything about that day. — Norman Nasser

Daughter’s perspective

Nothing is harder than witnessing someone you love be in excruciating pain with no relief. Mom had been in pain off and on since her accident in 1996. It had become unbearable during the 8 months before the end of her life.

My brother Norm was persistent in organizing appointments with generalists and pain specialists, as well as helping her try alternative treatments, from osteopathy to hypnotism. Nothing worked for more than a few days, if at all.

I felt incredibly helpless, knowing that there was nothing I could do to relieve her pain.

Norm and I shared a sad moment when we thought that Mom would very likely take matters into her own hands and attempt suicide. She had mentioned this as a quick method to end her pain. She would undoubtedly be alone, which was an awful thought. What if she wasn’t successful and made matters worse? We did not want a suicide attempt to be an option for our mom. We made a desperate call to Mom’s family physician, who recommended an admission to hospital for intensive management of her pain.

When Mom made the decision to pursue MAiD, I thought that the assessment period of about 3 months would give us enough time to say goodbye, reminisce and spend time together; time that we would cherish. When the assessment period was drastically shortened, I was thankful that the expedited process would fulfill Mom’s wishes, but it was a shock to know that she would be gone so soon. Time could no longer be taken for granted. It became a privilege, and it was running out very quickly.

I was allowed to visit Mom on the day before MAiD and be there with her until the procedure was over. Mom, prone to high anxiety, was the calmest she had been in a very long time. She slept through the night, which she hadn’t done in years.

The morning of the procedure, Norm, Mom and I said our goodbyes with a Tom Jones album playing, drinking German beer and enjoying her favourite foods. I felt that I needed to put on a brave face so that I wouldn’t upset Mom. It was so hard. However, I knew that Mom was at peace with her decision, and that made me feel at peace with losing her.

The void is huge. I miss her so very much. She haunts me like she promised she would! I still talk to her and hear her voice. I am so very thankful to my brother Norm for his determination in getting her the help she needed and to the medical team for listening intently and fighting for her right to be put to rest with dignity. — Nadia Pruett

Pain management nurse practitioner’s perspective

Several times a year, my palliative care colleagues reach out for assistance with patients who have complex pain management needs. I enjoy those collaborations. Becoming part of the circle of care for Monika turned out to be a very unique experience. I was told that debilitating pain had led Monika to request MAiD. Before meeting her, different thoughts went through my mind: “Is this really the goal? If pain becomes well controlled, will Monika’s outlook change?”

When I met Monika, her suffering was readily apparent. Her posture, her expressions and the sudden spasms contorting her body underscored her descriptions of pain and suffering. Despite this, Monika chose to present herself to the world with calmness and dignity. She was a very proud woman. She was inspiring.

>Monika wanted her pain to be better managed, but what was most important to her was to maintain her mind because that was “all she had left.” I outlined some new options for pain control and we agreed on a plan. I met her son, Norm, and I remember wondering, “How does he feel about all of this?” It was apparent that Norm was fully supportive of his mother’s goals and decisions. He had been tirelessly advocating for her for so long. I sensed he was finding some peace and that her request for MAiD finally provided a clear path to what she wanted.

Although the new treatments provided Monika with some brief periods of pain control, they were short-lived. Monika reported feeling clear-headed after stopping many of her longstanding pain medications and starting new ones. I like to think this increased clarity helped everyone feel just a little bit better about Monika’s decision to receive MAiD.

I saw Monika on her last day. It was amazing to see her room filled with pictures and music. Norm and Nadia were there. The delicious smells of some of Monika’s favourite foods filled my nostrils. It was nice to feel like I was not in a hospital for a brief period. In many ways, it felt like I was at a retirement celebration; a retirement from a life well lived. A retirement on Monika’s terms. It was difficult to leave the room. Helping Monika and her family find peace on her terms was a privilege and honor. — Jason Sawyer<

Palliative care physician’s perspective

At the height of the third wave of the COVID-19 pandemic, I was asked to see a new patient admitted to hospital with chronic pain. She had requested a palliative care consult, which was unusual in the absence of a life-limiting diagnosis. And so I went to meet her.

As I stood at Monika’s bedside, she was consumed by paroxysms of pain, but in her brief periods of reprieve, she showed a wry sense of humour. On her bedside tray was a small stack of pages that listed the myriad specialists who had tried to manage her complex pain. Also unusual — at the bottom was a note: she wanted to be assessed for MAiD.

I saw Monika daily over the subsequent month. I drew on the expertise of every specialist team I could for second and third opinions about pain management. Monika gamely agreed to every therapeutic option we proposed, while at the same time, from the moment of our initial encounter, she showed great conviction in her desire to move forward with MAiD.<

Bill C-7 had been enacted in Canada just weeks earlier, expanding access to MAiD for individuals who, like Monika, do not have a reasonably foreseeable natural death. I had provided MAiD under the previous legislation, and I supported C-7 in principle. But this was new territory. Suddenly I was engaging with C-7 much more quickly than I had anticipated. More than anything, Monika wanted to alleviate suffering, but I wrestled with the idea of providing MAiD to a patient who might otherwise live for years, albeit in agony.

I proceeded slowly, with valuable input from mentors. I tried to meet Monika’s request with openness. I learned of her years of living with chronic pain and the clarity of her wishes. I noted the unwavering support of her family. I reaffirmed with experts that her wish was within the law. I came to realize that what she needed now was the support of her health care team. Soon, I was navigating this terrain with a comfort I had not anticipated.

I encountered a new challenge when Monika developed medical complications that could jeopardize her future ability to consent to MAiD. She had intermittent delirium that was caused by a variety of factors, such as changes in hospital rooms, medications and a urinary tract infection for which she declined treatment. If she became persistently confused, she would lose her ability to access MAiD. We made the decision to set a MAiD provision date for that same week, only 30 days after we had first assessed her. It was a careful balance between avoiding haste and respecting Monika’s wish, and though the decision was agonizing to the medical team and her family, it was a great relief to Monika.

Monika’s medically assisted death was a moving experience. COVID-19 visitor restrictions meant only her son and daughter could be present, but the room was filled with photos and mementos from her life. The atmosphere was far from melancholic, but was suffused with calm and Monika’s palpable relief that her wishes were to be honoured. I am grateful to have had the opportunity to learn from Monika. — Amy Nolen<

360 Cases is a new type of Practice article that highlights the interpersonal and systemic aspects of health care that are seldom discussed in other Practice articles. Each comprises a brief case summary, followed by personal reflections from 2–4 people involved in the clinical encounter. One author must be a patient, family member or caregiver; the other authors may be anyone involved in the encounter (i.e., physicians, nurses, social workers, dietitians, etc.). For more information, see or contact Victoria Saigle (

Complete Article HERE!