Final moments of life have one thing in common

— Three professionals who work with death and dying have described the one thing they all have in common.

By Bek Day

Woody Allen famously said “I’m not afraid of death, I just don’t want to be there when it happens,” and whatever you think of the scandal-plagued filmmaker’s behaviour in life, it’s a sentiment many can agree with.

“We live in a death-denying culture,” says Dr Merran Cooper, who is also trained as an end-of-life doula and physiotherapist. “By denying the possibility we might die, and having conversations about it, we deny ourselves the opportunity to have the most important conversations of our lives with the most important people.”

But just what are those all-important final moments like for people? Is death really as frightening as we think?

News.com.au spoke to three professionals who work with death and dying and their descriptions all had one major thing in common: it’s usually more peaceful than you might expect.

Camilla Rowland, CEO of Palliative Care Australia

“My experience has been that usually as the different organs start to shut down, people come in and out of a semiconscious state, and it is usually very peaceful,” Camilla explains, adding that the feeling of someone’s ‘spirit’ ‘energy’ filling the room is also common.

“I’ve had that experience, and also many other members of my palliative care team have said that as well, that they felt the spirit of the person around them. And that’s not necessarily a religious thing, it’s just a feeling that occurs. I’ve had people from all walks of life and all different belief systems say the same thing.”

Patsy Bingham, Death Doula

“Peace, calm, relief, hysteria – there could be any one of these feelings depending on who died, how they died and whether they were too young to die,” explains Patsy.

“But for everyone, it is a defined moment in time, and I have a habit of looking at the clock when someone takes their last breath, as family members don’t, and then ask later.”

Dr Merran Cooper, CEO of Touchstone Life Care

“Everyone dies differently but most commonly, when death is expected, a person begins to sleep more, and breath more shallowly until it is very hard to tell whether they are breathing or not,” Dr Cooper explains.

“It can be a peaceful thing to watch. There are noises that worry the person watching, and even bleeding which is distressing to watch, but for the person dying, they slowly move to a place of deeper and deeper unconsciousness until they do not take the next breath.”

Complete Article HERE!

‘A Last Act of Intimate Kindness’

I had barely seen my brother in decades, but when time was short, he let me in.

By Michelle Friedman

The message I had dreaded for years appeared on my phone: “Looking to find the sister of my patient, Jay Friedman.”

My ensuing phone conversation with the doctor brought ominous news. My 65-year-old brother, Jay, had advanced pancreatic cancer. He and I grew up together in Divine Corners, N.Y., a hamlet in the Catskills, raised by secular Holocaust survivor parents who stumbled into raising chickens. Their histories, coupled with the isolation and poverty of the farm, rendered my father brutal, especially to his only son.

I am the only family member with whom Jay maintained contact for the last three decades. Over that time, we communicated exclusively through email and cards I sent to a post office box. Despite working a quarter century in I.T. for the local school system, my brother did not own a cellphone. His doctor found my number via Google.

Jay was admitted to a fancy Seattle hospital where I called him via the landline next to his bed. His voice sounded weak, plaintive.

“Jay, I’ll come,” I said. “Let me be with you.”

“I don’t know,” he said. “My house is a mess.”

“I can stay in a hotel.”

“I’ll let you know.”

I panicked. I knew the prognosis was dire, but my brother’s lonely life cast an even darker shadow.

The hospital discharged Jay with a bag hanging from his chest to drain bile from his tumor-blocked liver. A few days later the doctor called again. Jay wanted my help.

I caught a flight to Seattle, picked up a rental car and drove around Puget Sound to a town in Kitsap County. Before entering Jay’s house, I muttered an ad hoc prayer for strength. Following the sounds of his weak voice through the maze of papers, boxes and computer parts, I found my brother lying on the couch. The disease had consumed him, leaving his body whittled, skeletal. Only Jay’s voice sounded familiar, a gravelly baritone.

“Thank you for coming,” he said. “I’m sorry I was snappy over the phone.”

The blanket wrapping my brother was full of holes. A brown crust covered his kitchen floor and counters. Jay drank tea with lemon in the one glass he possessed. Not owning a kettle, he boiled water in an old pot.

I brewed tea and baked a piece of chicken. After a few sips of liquid and child-size bites of food, Jay felt full. He slowly climbed the stairs to the single bed in his bedroom. The sheets hadn’t been changed in months. All I found in the closet was a cotton duvet cover that I recognized from the farm where we grew up. The faint smell of the detergent and crisp lines from our mother’s iron told me Jay had never used it.

Retreating to a Best Western hotel two miles away gave me guilty relief. It was no palace, but it was clean and orderly.

In the morning, the doctor outlined my brother’s stark medical options. Surgery was out. Jay could pursue radiation or chemotherapy, but neither was likely to yield much in terms of quantity or quality of life.

Jay made his choice in seconds — no aggressive medical intervention. The focus shifted to palliative care at home.

He didn’t have much time, weeks. How was I to start a conversation with him about his death? I knew he took pride in his money management and had saved a lot (though I had no idea then how surprisingly much), so that’s where I started.

“Jay, have you thought about what you want to do with your money?”

“Yes, I’ve thought about this a lot. I want to give it to Planned Parenthood.”

“All of it?”

“Yes.”

His calm answer startled and pleased me. Throughout our decades of sparse contact, Jay stayed vague when it came to his personal opinions.

“Jay, that’s amazing! How did you come to this decision?”

“There are too many people in the world, and I believe that people should have autonomy over their own bodies.”

I sat in silence thinking about my brother’s autonomy, the little boy overwhelmed by our rageful father, the awkward teenager who wanted to join the Navy to get away but lacked nerve. My practical mind kicked in. “Jay, do you know a lawyer?”

Once again, he surprised me. “Yeah. One of the teachers I know went to law school at night. He’s a good guy.”

Jay had no contact information for the lawyer, but I found him through the school. He answered my text within minutes and got to work preparing the necessary papers.

By the next day, Jay could no longer crawl up and down the stairs and spent most of his time in his bedroom. We moved the mattress to the floor in case he rolled off during the night. I pleaded with hospice to fast-track Jay onto their service, and soon a nurse arrived and taught me how to dose the medication: morphine for pain, Haldol for nausea and Lorazepam for anxiety. Each floated in a medicine-dropper-topped bottle so that liquid relief could be applied to the inside of the patient’s cheek.

Jay’s condition deteriorated quickly, and I no longer retreated to the Best Western. My first night in Jay’s house, I slept downstairs on the sofa. The next night, I worried that I wouldn’t hear his whimpers, so I moved to the floor next to his mattress. My younger brother’s vulnerability pierced me; he was the innocent little boy on the farm who trusted me. I cried, silently.

When he no longer ate or drank, I repurposed a medicine dropper to drip orange juice and seltzer onto his parched lips.

The lawyer met privately with Jay and later told me of his firm wish to be cremated.

A clutch grabbed my heart. Jewish law, which I follow, prohibits cremation. “Can I at least get Jay’s ashes so that I can bury them according to our faith?”

“Yes. I think that will be OK.”

“We haven’t talked about this, but I’m wondering if you are part of a religious tradition?”

“I am. The Church of Jesus Christ of Latter-day Saints.”

His answer bolstered me, given what I was about to request.

“Can I ask you one more favor?”

“Sure.”

“When the time comes, I want to do a Jewish ritual washing for Jay. It’s called a tahara. It means purification. I’ll need help; it’s too hard to do alone.”

“Of course. Call me when you need me.”

The days passed in a kind of waking dream. Jay talked on and off, disclosing struggles of all kinds. He liked hearing stories about Divine Corners, how we played in the snow and explored the brook behind the coops. I emptied his drainage bag and changed his adult diapers.

“This is disgusting,” he said.

“I’m fine,” I said. “I’m here for you. There’s nothing else I want to do.”

As our mother did when we had fevers as children, I gave Jay a sponge bath and changed his worn pajamas to a clean set.

Jay quietly slipped away. He told me that his dream was to buy a house on a lake with a few acres of land.

“That’s such a nice idea, Jay,” I said. “I love you.”

“I love you too.”

And then I made a plea I knew people have uttered for millenniums. “Send me a sign, Jay. Please send me a sign from the other side.”

Early Thursday morning I woke up inches from my brother to find him gone. No labored breathing, no death rattle. His skin had cooled, his limbs stiffened.

When the sky was fully lit, I called his friend, and we performed the tahara. We removed Jay’s pajamas, removed the drain and bag, all the while using a clean sheet to keep his frame covered and dignified. I repurposed the battered teapot to pour water over his body, starting with his head and moving to his feet. We toweled him dry, dressed him in long underwear and wrapped him in the duvet cover from our childhood farm. The work felt tender, holy, a last act of intimate kindness.

The mortuary people came and removed Jay’s body. At 6 o’clock I boarded the van for the airport. Only one other person got on, a white-haired woman in a sweater set. I saw that she bid a sorrowful farewell to the man seeing her off. She sat a few rows behind me. Drizzle and traffic caused delays, but our elfin driver navigated the trip and asked us which terminals we needed.

“American,” she said, turning mournfully in my direction. “It’s a sad trip. My brother is dying of brain cancer in Florida.”

“United,” I said, and to her: “I just left after taking care of my brother, who died this morning. I hope you get there in time.”

We reached across the aisle and held hands. Jay had made good on his sign.

Complete Article HERE!

‘I’m a Death Doula and This Is the Top Way Most People Prefer to Be Comforted at End of Life’

By Jessica Estrada

Death doulas or end-of-life doulas, if you’re not familiar, are trained professionals who help people who are dying and their loved ones. These doulas provide emotional and practical support such as sitting vigil, helping plan funeral and memorial services, communicating with the medical support team, and assisting families with processing grief. Ensuring the person nearing the end of their life is comfortable is another big element of the job. While every death and situation is different, there are many practices and rituals that death doulas do—and teach and encourage the person’s loved ones to do—to bring comfort to the dying.

Below, Ashley Johnson, the founder of Loyal Hands, a team of millennial death doulas, shares five rituals, including the top way most people prefer to be comforted at the end of their life. Interestingly, many of these practices are universally comforting, even for those who are not actively dying, and can be incorporated now to help cultivate comfort in your everyday life.

Create a comforting ambiance

Setting the mood and creating a comfortable ambiance is important. Many people prefer to die at home, Johnson says, but wherever they may be, there are things you can do to make the environment as comfortable, familiar, and soothing as possible for them. To do this, she suggests asking the person what their ideal last day would consist of. Some ideas she recommends include playing their favorite music, having soft lighting, filling the room with soothing scents, and having their pets around.

Rub their feet or hands

Rubbing a person’s hands and feet can also provide comfort. “The last senses to go are usually touch, followed by hearing,” Johnson says. “Gently rubbing hands and feet will help the family and the dying process the labor of death. The comfort of massage helps relax tense moments. That sense of touch reminds the dying that they are loved and not alone.”

Sit vigil

Sitting vigil with someone nearing the end of their life also provides great comfort. Johnson says this involves sitting bedside with them, actively listening, and ensuring they are as comfortable as possible during their final hours. Sitting vigil also includes relaying any sign of pain to the hospice team.

Perform deathbed rituals

Deathbed rituals are a way to honor the dying person and their loved ones, Johnson says. Rituals can be done before, during, or after death and can be religious, cultural, or simply personal things the person finds comforting. For instance, Johnson recalls one client requesting that his family wash his body with warm water and lavender.

Shift their perspective on death

Death doulas also support the dying and their loved ones to adopt a death-positive mindset. They do this by having conversations about death, dying, and grief and encouraging them to view death as a normal part of life that everyone experiences. That can help reduce fears and anxiety around death.

Share and preserve memories

Another way death doulas help grieving families is by encouraging them to share memories and stories about their loved one. “This can help provide the family with a sense of purpose and also help significantly with coping and healing,” she says. You can get as creative as you’d like with this. Some ideas Johnson shares include capturing voice memos and videos, creating a family cookbook, planting trees in their honor, stitching a memory blanket together, donating to a charity they support, and keeping trinkets and mementos around that remind you of them.

Help get their affairs in order

According to Johnson, the top thing that makes people nearing the end of their life feel the most comforted is ensuring that their affairs are in order before they pass. Not only will this cause less stress to their loved ones, it also helps them achieve a sense of completion and peace before they pass.

“While legal documents are important, complete end-of-life care also includes helping the dying person spiritually, mentally, and emotionally in alignment as well,” Johnson says. “People ideally would like to transition with a sense of completion, a sense of satisfying their purpose here [in] this realm.” Examples of things that can provide that sense of fulfillment include extending forgiveness or requesting forgiveness from others, releasing things beyond their control, and addressing any fears or concerns around death.

Complete Article HERE!

Simulation in medical school helps prepare doctors to care for dying patients

by

Simulated experience of caring for a dying patient and their family can improve the confidence and preparedness of medical students to provide such care, according to a new study by Brighton and Sussex Medical School (BSMS) published in BMJ Supportive & Palliative Care.

Immediately after the simulations were completed, student confidence almost doubled (98% increase) in relation to communicating with dying patients and their family. Confidence in patient management increased by two-thirds (66.2%), and increased by almost one half (48.4%) for multidisciplinary working. These increases in confidence were sustained when measured again six months later.

Qualitative measurements of preparedness demonstrated that students welcomed greater exposure to hands-on teaching on the care of dying patients, and felt better prepared to provide this care following the simulated experience.

Lead author Dr. Geoff Wells, Honorary Clinical Lecturer at BSMS and ST6 Registrar in Palliative Medicine at University Hospitals Sussex NHS Trust, says that “Foundation Year 1 trainees, straight out of , can feel anxious, poorly prepared and unconfident in providing care for dying patients.”

“Our study showed that after a series of simulation sessions reported a marked increase in , which was maintained six months later.”

Year 4 students at BSMS took part in eight half-day simulation sessions, which used a hi-fidelity mannikin (with pulse, breathing sounds and chest movements) to represent an unconscious, dying patient and an actor to play a family member. A range of scenarios were played out, including some in which the patient died.

Dr. Wells added that they “use simulation to teach many areas of medicine, particularly in managing acute emergencies, and this is known to be an effective teaching tool. As with an , with a dying patient you also have a to provide appropriate and competent clinical care, with a single opportunity to get it right—so there are parallels between the two situations.”

“Ultimately, we believe developing simulation in palliative care teaching could reduce distress among , with the patient dying comfortably, and with any previously unmet needs having been addressed.”

Following the success of this study, these simulations are now being incorporated into the BSMS undergraduate curriculum so that all students will have the opportunity to learn from simulated care of the dying scenarios. This will also provide many opportunities for further study with much larger participant numbers.

Complete Article HERE!

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

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

Making the decision to ‘transition to comfort’

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

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

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

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

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

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

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

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

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

The ‘principle of double effect’

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

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

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

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

Complete Article HERE!

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!

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.

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