— A Nurse Explains What Dying Bodies Do
It’s hard to ask your doctor what dying will be like. Death is a gut-wrenching reality for everyone. If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
- If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
- There are similarities to every death, but each dying person’s journey is unique.
- Normal signs and symptoms of dying are increased fatigue and weakness, social withdrawal, increased pain, loss of appetite and thirst, and altered mental status.
- Changes in the bladder, bowel movements, breathing, and vital signs are also normal.
- Facing these changes alone can increase suffering. Seek help earlier in your journey from your loved ones and a palliative care specialist.
A “good” death to most people is free of avoidable suffering and aligns with their cultural, spiritual, and relational wishes as much as possible. To achieve a more peaceful death, studies and experts say preparing helps.
As a hospital nurse, I cared for many dying people during their final hours and walked their families through the process. Every last breath was sacred and unique. The patients who learned about death and talked about what they wanted to develop a realistic plan for their comfort. They were more likely to avoid unnecessary suffering for themselves and their families.
At a point in the dying process, you’ll become unconscious and no longer able to express your wishes. Talking sooner than later about your end-of-life needs empowers your family and caregivers to care well for you when that time comes.
What it’s like to die: signs and symptoms of natural dying
A “natural” death refers to someone dying of a terminal illness or old age. More sudden death due to a traumatic injury will have some of these similar signs but at a more rapid pace depending on the injury. These signs and symptoms occur during the last few months to hours of a dying patient.
1. Weakness and fatigue
As the end nears, it’s normal to feel weak and sleepy, but the timeline differs for everyone. Some become weak quickly while others – often younger or healthier at diagnosis – take longer but then decline rapidly.
It’s okay to sleep as much as you need. Try to time your daily tasks and activities for when you’re more likely to have energy.
As you get weaker, a simple activity like sitting outside, going out to eat, or being with your children can cheer you up, even if it’s exhausting. But there may be a point where you simply can’t do it anymore.
Be honest with your loved ones and caregivers about how you’re feeling. Rather than push yourself too hard, be willing to ask for help when your muscles become too weak to move on their own.
2. Social withdrawal
As you progress toward death, you may feel less social. It can be hard to tell this to your loved ones, especially if you’re from a culture or community that many people want to visit. But it’s okay to let them know if you want fewer visitors. Try your best to explain how you feel, assuring them it’s not their fault.
At the end of life, some people want to be surrounded by friends and family instead of becoming less social. Let your loved ones know if you enjoy their visits.
As you feel more withdrawn and weaker, consider the remaining important things you wish to say and try to have the courage to say them before it’s too late.
Your pain may increase as your disease advances or your joints stiffen, but no one should suffer needlessly. Medications, hospice care, and alternative health treatments all help ease your discomfort.
It is difficult for your loved ones to see you hurt. Be sure you talk thoroughly with them about how you want to manage your pain. You may want enough medication to ease the pain while also staying awake with loved ones. Or, you may want the medicine to help you sleep painlessly for much of the day.
Take oral pain medications 45 minutes before the pain becomes intense or before you have an activity planned. Use consistent language to describe your pain so loved ones and caregivers understand when it changes. Make a list of questions about pain management to ask your hospice nurse during their next visit, such as when to call them about increasing pain and how best to take your pain medication. Consider alternative treatments like acupuncture, massage, music therapy, or Reiki.
As you near death and can no longer talk, your loved ones and medical providers will watch for nonverbal signs of pain like grimacing, moaning, stiffening, resistance when they try to move you, calling out, restlessness, or labored and uncomfortable breathing. They can give you medications for any signs of discomfort.
You can trust that with medical help like hospice, you’ll be more comfortable and peaceful.
4. Loss of appetite and thirst
Nearly all patients lose their appetite as they near the end. Your brain will not trigger hunger and thirst sensations during the final stage of death, so you may have no desire to eat or drink.
Eating and drinking less – or not at all – is a normal part of dying as the body stops using nutrients like it did when it was healthier. As a result, your hospice nurse won’t advise trips to the hospital for intravenous (I.V.) fluids or artificial nutrition.
Your loved ones might fear you’ll “starve to death” and plead with you to eat or drink, believing it will increase your comfort and strength. Remind them with kindness that you’re not uncomfortable. When your body is dying from an incurable illness, it will continue to shut down no matter how much you eat.
Eating or drinking less may make your mouth dry and uncomfortable, however. You or your loved ones can apply lip balm and mouth moisturizer. You can also lightly moisten oral sponges with water to moisten your mouth.
5. Dreams, visions, and hallucinations
In the final days and hours, you may become less alert, drifting in and out of consciousness. Many dying patients have dreams and visions of lost loved ones, God, or other spiritual realities. You may experience hallucinations or a surge of energy just before you die. Some feel an increased awareness of death as it gets closer.
For most people, this delirium or altered state of consciousness is peaceful and not distressing.
However, if you become agitated, medications like haloperidol can restore your comfort. Caregivers can also check for other problems like pain, constipation, bladder infections, or side effects of medication.
If you experience such symptoms when you are still awake and alert, it can be helpful to talk with loved ones or care providers like end-of-life doulas and hospice nurses, counselors, and chaplains.
6. Bladder and bowel changes
At different stages during the dying journey, you may notice bowel and bladder changes.
Your urine may change color due to organ failure, and you may urinate less. Depending on your disease process, you might lose control of your bladder – also called bladder incontinence.
Incontinence can cause skin breakdown for bedridden patients. If this happens, some medical providers recommend a urinary catheter if they increase patient comfort while protecting their skin. A catheter may also be recommended if your bladder is retaining urine.
Constipation is not uncommon at the end of life. Your medical providers should counsel you on taking stool softeners and laxatives for constipation. These should be stopped or decreased, however, if you stop eating.
It may feel awkward, but it’s always best, to be honest about these symptoms with your caregivers.
7. Skin changes
In the later stages of the dying process, your skin may change in temperature and color as it stops functioning. During your final days, your body will move blood away from your arms and legs while it shunts it to the vital organs. These changes can make you feel cold and make your skin look pale, gray, or blotchy.
Some people, however, feel warm and flushed or develop a slight fever. A cool cloth on one’s forehead may ease the heat.
Keep your loved ones informed when you get too cold or hot. This helps them understand your body’s trend to care for you when you’re unconscious. Heated blankets and heating pads can be helpful but can also burn your skin if ignored.
8. Breathing changes
When people are within days to hours of dying, their breathing changes. Sometimes it’s very slow and regular with only a few breaths each minute. For others, it’s slow and irregular where they may breathe three breaths and then wait 45 seconds to take another breath.
Some patients breathe very fast, then slow down, pause, breathe fast again, and so on. This is a normal end-of-life breathing pattern called Cheyne-Stokes respiration. It can occur when the brain forgets to trigger breathing.
When you reach your final breaths, agonal breathing is common. Agonal breaths look like the patient is trying to gulp for air and can be distressing to loved ones if they’re unfamiliar with it. Nurses sometimes nickname it “guppy” breathing because the mouth opens wide and the jaw and shoulders work to pull oxygen into the lungs.
When the diaphragm and other muscles weaken, phlegm builds up in a dying patient’s airways, making a rattling sound when they breathe. This is known as the “death rattle.” If this rattle occurs to you, it will not feel uncomfortable, but the sound can be distressing to loved ones. Your caregivers may reposition your body or your neck to reduce the rattle.
If a medication like atropine is given at the beginning of your final days, it may improve the death rattle later when it occurs in your final hours.
These breathing changes – even agonal breathing and the death rattle – rarely, if ever, cause discomfort. They are a normal part of dying and occur when you are in a relaxed and unconscious sleep.
If your breathing does look painful, very labored, or very rapid, your loved ones or nurses will give you a medication like oral or I.V. morphine, because the labored breathing may be a sign of pain. Morphine is typically the end-of-life pain medication of choice because it not only dulls the pain but also eases your breathing.
You may want to continue wearing oxygen as you reach the end. In most cases, it will not lengthen your life significantly during the final days, but some people find it comforting.
9. Heartbeat and blood pressure changes
Changes in your heartbeat and blood pressure will also occur. Your heart rate may become irregular and eventually weaker as your heart fails. These are normal changes and are not treated at the end of life. To de-medicalize the dying process for the patient and their loved ones, most medical providers will stop monitoring vital signs during a patient’s final days.
Facing death takes profound courage. If you have an incurable illness and know death approaches, gather your loved ones and your medical team around you. Consult with a palliative care specialist sooner than later to help you through the journey. Be sure to talk openly with them about tough topics such as what it’s like to die and how they can help make you comfortable.
Complete Article ↪HERE↩!
Patients want comfort and peace at the end of life, but each one defines this differently. Death is a deeply personal journey, and more than anything when facing death, patients want medical providers and loved ones to hear and value their unique needs.
By Sharleen Lucas, RN
- Dying patients want comfort and peace. Each patient defines this differently, but there are 7 common requests they make.
- They want dignity and open talks about their illness and their treatment.
- They want to be comfortable.
- They want relief from burdens, time with loved ones, and a legacy that outlives them.
- They may even want to die alone.
Death is a sacred journey, unique to each person. Knowing what a dying loved one wants is what matters.Patients with advanced illnesses may have a few days or years to live. The phrase “end-of-life” refers to the final stage of an incurable disease or injury. A time frame does not define this last stage of life because it’s a unique journey for each person.
“Every death journey follows along the same path in different ways,” explains Delta Waters, a death doula, and registered nurse. Like birth, each patient has unique symptoms and desires.
Patients, end-of-life specialists, and researchers agree on these seven common requests from dying patients.
Dignity refers to a person’s inherent nobility and worth. Respecting a patient’s dignity is one of the most common values held by patients, loved ones, and medical providers alike.
But dignity is not an objective, one-size-fits-all concept. It means something different to each person.
“To most end-of-life patients, dignity means, ‘Until my dying breath, I feel like you treat me as if I’m alive and cared for,'” said Beth Patterson, a certified end-of-life doula, and veteran palliative care chaplain.
To one patient, feeling alive and cared for might mean staying on a life-saving machine until they die. To another, however, removing devices is more dignified. Some patients may want a family member to care for their bodily needs, while others may hire an objective caregiver.
Either way, honoring a patient’s wishes whenever possible is the best way to honor their dignity.
2. Open talks
When you’re well, you don’t care to talk about sickness. But when you’re sick, almost everyone wants to talk.
According to a 2011 study of Californian’s attitudes toward end-of-life, 79% of people would “probably” or “definitely” want to talk with a doctor about end-of-life treatment if diagnosed with a serious illness.
Most patients want frank discussions, but some don’t, asking doctors to give the hard truth to their loved ones instead. Many want to know how the medical team will treat their pain and symptoms. A few want to know what the end will be like. Sometimes patients want advice on talking with family or finding meaning in their final days.
Studies confirm that when medical providers talk openly with patients and their loved ones about their dying journey, it improves the quality of life for the patients and their families. It also decreases excessive treatment – which often causes greater patient suffering.
The 2011 study in California found that a quarter of Californians faced language issues with their medical providers, drastically reducing their quality of care. To prevent this, medical providers are required to provide interpreters.
But not all talking needs to be about a patient’s end-of-life treatment, Waters told me. A simple chat over a cup of coffee about whatever comes to their mind helps dying patients feel normal.
3. Comfort and symptom relief
It’s not surprising that dying patients want to be comfortable. Most importantly, comfort means symptom relief, but it also includes how and where they want to die. Most people prefer to die a natural death at home rather than in a hospital connected to machines.
Common end-of-life symptoms include pain, shortness of breath, increasing weakness, anxiety, nausea, loss of appetite, and thirst. Some patients want these symptoms controlled to the point where they mostly sleep. Others choose to endure some discomfort to be awake with loved ones.
Doctors and nurses provide many medical tools for managing symptoms. Patients may also find relief from complementary and alternative therapies.
The goal of symptom relief is comfort – as defined by the patient. Not clearly understanding a patient’s symptoms and desires for comfort can increase their suffering.
4. Relief from burdens
End-of-life patients worry about their families, their finances, and what the end is like. Most of all, dying patients want to know their loved ones will be okay.
One of the best ways to ease these burdens is hospice care. Hospice offers holistic care and counseling for patients facing their last six months of life. With care provided by nurses, aides, medical social workers, counselors, and volunteers, hospice is typically free of charge thanks to Medicare coverage and hospice fundraising.
Sadly, however, most patients wait too long to start hospice. Instead of using hospice for their last six months of life, about 50% of patients only use it for their final 18 days or less.
Contacting hospice sooner helps relieve patients and loved ones of their worries. At a time when every day counts, hospice may even lengthen patients’ lives for up to 29 days.
5. Time with loved ones
Most dying patients want to spend as much time as possible with loved ones. Many want to strengthen relationships, resolve old hurts, and pass on love, wisdom, and stories.
In his book, Dying Well, Dr. Ira Byock says there are five necessary statements to say to your loved ones at the end of life.
- Forgive me
- I forgive you
- Thank you
- I love you
These statements help relieve the spiritual and relational burdens of both the dying and their loved ones.
6. A legacy
Loretta Bruening, Ph.D., founder of the Inner Mammal Institute, writes, “You are hard-wired to care about what you leave behind when you’re gone…The neurochemistry that drives animals to promote their genes is what drives you to care about your legacy. Understanding that is important to your happiness.”
Contributing to others and leaving a legacy is called generativity in psychology. It refers to the need of humans later in life to leave their mark. They want to create something that will live after they die.
End-of-life studies support this, saying dying patients show a need to contribute to their community to feel needed, significant, and remembered. Some patients create gifts, start projects, continue to work or make financial donations. Others offer time and knowledge to their community and loved ones.
After working with thousands of dying patients, Patterson knows the importance of a legacy unique to each person. She told me about one patient who left a legacy of “words and actions” by earnestly creating videos for his wife and the first responders he led as captain of the fire station. In contrast, Patterson also recalled a Buddhist coworker who felt no need to create a legacy because her “life was her legacy.”
7. Maybe to die alone
As Waters reminds us, “In the end, even though death is a universal human experience, it’s still a solitary journey for each person.” And some want it that way.
As an RN, I cared for a dying patient in the hospital who lived days longer than his family expected. At age 90, with a failing heart, we thought death would come quickly. His family sat with him each day, taking turns at night. They grew exhausted after several days but were grateful to be with him.
They wondered why he held on so long. We discussed that perhaps he wanted to die alone, so the family decided to go to dinner together, leaving the patient with our staff for an hour.
Not long after they left, his breathing changed and slowed, eventually stopping before the family returned.
Patients who want to die alone are common, according to hospice staff and death doulas. It can be hard on loved ones, but letting patients die alone if they want to is another way to honor their wishes and dignity.
There’s no “right” way to die. Death is an individual’s sacred and one-of-a-kind moment. What matters is honoring each patient’s unique dignity and desires.
Complete Article ↪HERE↩!
— 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↩!
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↩!
— What to Expect
By Angela Morrow, RN, BSN, CHPN
When a person is dying there is an end-of-life stages timeline that can help their loved ones understand what is happening to them.
The dying process usually begins well before death takes place. Sometimes, you can recognize the signs that a person is dying by the physical, mental, and emotional changes that are part of the end-of-life timeline.
Death is a deeply personal journey. Nothing about the process is certain or set in stone except for the outcome. There are many paths a dying person can take, but the stages at the end of life do have some similarities.
This article will go over the end-of-life timeline. You will learn about each stage of dying, starting with what happens about one to three months before death; during the last two weeks before death, and in the last few days of life. Understanding the signs of each stage of death will help you prepare and understand what is happening when your loved one is dying.
The End of Life Stages Timeline
The end-of-life timeline starts when someone is very ill and will not recover. At this point, your loved one may have been ill for a long time, or they may have just recently learned that the end is near. In either case, the dying process is set in motion.
Dying is a journey from the known life of this world to the unknown of what lies ahead. Each person starts on a mental path of discovery knowing that death will happen and believing in their own mortality. Ultimately, they will leave their body.
There are several milestones on the dying journey, but not everyone stops at them all. Some people may stop at only a few, while others experience each one and take their time throughout the process of dying. Sometimes, the process takes only days, while other people travel a road for months.
While the paths they take can differ, here’s where the dying process begins for most people.
End of Life Timeline: 1 to 3 Months Before Death
The dying process often comes into view about one to three months before death. Many of the experiences that take place at this first end-of-life stage are broadly common but the specifics can depend on the individual.
There are also social and cultural factors that shape a person’s dying experience—for example, gender roles can be a factor. Research has shown that men are less likely than women to openly talk about their mortality and end-of-life wishes. One reason might be that men find it more difficult to ask for help and want to avoid coming across as being “needy.”
That said, these differences are not necessarily unique to one gender identity; there are plenty of women who struggle to talk about their death and do not want their loved ones to feel “burdened” by caring for them during the dying process.
As a person approaches their death, their religious and cultural background also influences how they feel about the dying process. Depending on their beliefs, certain practices, rituals, and customs can be steps along the end-of-life timeline.
Mental and Behavioral Changes
As a person starts to accept their mortality and realizes that death is approaching, they may start to withdraw. They are beginning the process of separating from the world and the people in it.
During this stage, your loved one may say no to visits from friends, neighbors, and even family. When they do accept visitors, it might be hard for them to interact with you. In those moments, you may struggle with your feelings about them because you feel rejected.
This stage is also one of reflection. A dying person is thinking about their life and revisiting old memories.
As the body starts to slow down, a dying person may have a reduced appetite and weight loss. This is actually OK because the body no longer needs as much energy. A dying person may start sleeping more and stop doing their regular activities—another reason why they need less nourishment.
The body chemistry is naturally altered during this end-of-life stage and that can cause a mild sense of happiness and well-being (euphoria).
The dying person may stop feeling hungry or thirsty at this stage. While this can alarm their loved ones, they are not suffering in any way by not eating; it is an expected part of the journey they are taking.
End of Life Timeline: 1 to 2 Weeks Before Death
The dying process starts to move faster in the last week or two of a person’s life. The acceleration can be frightening for their loved ones, especially if they are upset by the changes taking place.
As your loved ones’ death is approaching, you may want to “correct” them if they say things that don’t make sense but try not to. At this stage, it’s better to listen to and support your loved one.
For example, your loved one might say that they see or hear a person who died before them. In those moments, just let your loved one tell you about it. You might feel frustrated because you can’t know for sure what they are going through in those moments—are they hallucinating? Are they having a spiritual experience? The uncertainty can be unsettling but it’s part of the process. The best thing you can do is love them.
Mental and Behavioral Changes
During this stage of the end-of-life timeline, a person will mostly be sleeping. When they are awake, confusion and altered senses are common. It’s possible that a loved one will experience delusions, like fearing hidden enemies or feeling invincible. It can be hard for you to witness these changes, but it’s important that you remain supportive.
The dying person may have hallucinations at this stage. They may see or speak to people who are not there, including those who have already died. Sometimes, people feel that this is like the veil between two worlds lifting.
The dying person can be restless during this time. They may pick at their bedsheets or clothing and their movements and actions can seem aimless and make little sense to those around them.
At this point in the end-of-life timeline, a dying person’s body is having a hard time maintaining itself. Your loved one may need help with just about any form of activity. For example, a person may have trouble swallowing medications or may refuse to take the ones they are prescribed. If they have been taking pills for pain, they may need liquid morphine now.
During this end-of-life stage, signs that death is near include:
- Body temperature that’s a degree lower than normal (or more)
- Lower blood pressure
- An irregular pulse that may slow down or speed up
- Increased sweating
- Skin color changes, with pale or bluish lips and nail beds
- Breathing changes (e.g., a rattling sound and cough)
- Less or no talking
- Sudden arm or leg motions
End of Life Timeline: Days to Hours Before Death
The last couple of days before death can surprise family members. At this stage, your loved one may have a sudden surge of energy as they get closer to death. They may want to get out of bed, talk to loved ones, or eat food after having no appetite for days or weeks.
You may take these actions as signs that a dying person is getting better, but the energy will soon go away. It can be hurtful to watch this happen but know that this is a common step within the end-of-life timeline. These energy bursts are a dying person’s final physical acts before moving on.
The surges of activity are usually short. The previous signs of being close to death return more strongly once the energy has been spent.
At this stage, a dying person’s breathing becomes more irregular and slower. Rapid breaths followed by periods of no breathing at all
(Cheyne-Stokes breathing) may occur. You may also hear a “rattling” sound as a dying person breathes.
These changes can be unpleasant to witness but you should try to remember that your loved one is not uncomfortable.
Your loved one’s hands and feet may start looking blotchy, purplish, or mottled. The changes in skin appearance may slowly go up the person’s arms and legs. Their lips and nail beds will turn bluish or purple, and their lips may droop.
At this end-of-life stage, a dying person usually becomes unresponsive. They may have their eyes open but not be able to see their surroundings. It is widely believed that hearing is the last sense to leave a dying person. Knowing this can remind you that it’s still valuable to sit with and talk to your dying loved one during this time.
When your loved one stops breathing and their heart stops beating, death has occurred. They have reached the end of their journey.
Many people wonder if they will recognize that a loved one is dying. There are often signs that begin a month to three months before death. Knowing these signs may help you prepare for your loved one’s death, and bring comfort to you as you face the physical and mental changes that happen along the end-of-life timeline.
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Findings could help families prepare and aid in end-of-life care choices
By Alan Mozes
Researchers say they have identified eight specific physical signs that strongly indicate that someone with advanced cancer is entering the last days of life.
The investigators focused on telltale signs that a patient has, at most, just three days to live. The hope is that this information will help family members and other caregivers better handle an impending death, as well as be more prepared for choices that may have to be made during end-of-life care.
“I think the bottom line is that our study identified several classical signs that can be observed by the bedside by doctors, nurses and even family caregivers, which may help them to determine with confidence that the patient has entered the final days of life,” said study lead author Dr. David Hui. He is an assistant professor in the department of palliative care and rehabilitation medicine at the University of Texas MD Anderson Cancer Center in Houston.
He also said that “we believe these signs may apply to both cancer and even non-cancer patients, because these signs occur as part of the natural process of dying.”
Hui and his colleagues reported their findings in the Feb. 9 online edition of Cancer.
To compile their list, the researchers monitored physical changes that occurred just prior to death among more than 350 advanced-stage cancer patients. They were being treated at one of two cancer centers: one in the United States and one in Brazil. All of the patients were in an acute palliative (end-of-life) care unit.
Physical changes were noted twice daily, according to the study.
During the study time frame, more than half (57 percent) of the patients died. And in the end, the authors settled on eight indicators that seemed to most accurately predict imminent death.
Those included: an inability to close the eyelids; diminishing ability to react to visual stimulation; a reduced ability to react to sounds and words; facial drooping; non-reactive pupils; hyperextension of the neck (this causes the head to tilt further back when lying down); vocal cord grunting; and bleeding in the upper digestive tract.
“It is important to point out that only a small proportion of patients may have each of the signs before death,” said Hui, “although a majority would have at least one of the signs in the last three days of life. The presence of these signs strongly suggests that death will occur in the next three days. However, absence of these signs does not suggest that death will not occur.”
Some signs seemed to be more common than others, with some occurring among just 5 percent of the patients while others were seen among nearly 80 percent during the last three days of life, according to the study.
Hui also cautioned that there will always be exceptions to the rule, and his team’s list will not cover all situations. Exceptions, he said, would include cases of sudden death or when intensive care unit patients are breathing by means of mechanical ventilation.
Dr. R. Sean Morrison is director of the Lilian and Benjamin Hertzberg Palliative Care Institute at the Mount Sinai Icahn School of Medicine in New York City. He said that, while doctors are already very familiar with signs of impending death, the list could be very helpful for families struggling to come to grips with a disorienting set of circumstances.
“Within the palliative care community, this is very well understood,” Morrison noted. “And this is certainly not just about cancer. This would apply to anyone dying of heart disease, lung disease or even dementia, because the symptoms that are identified in this cancer population are almost universal for anyone approaching the end of life.
“But from a clinical perspective as physicians, I don’t think this list will prove terribly helpful,” he added. “Because what we’re talking about here is really people hours from death who really can’t respond or are not interactive or are essentially in a coma approaching death. So I would hope and expect that by this point a discussion of patient goals and family needs would have already taken place, long before, along with any decisions about blood tests and treatments.”
Still, Morrison said the list could be “helpful for the family, and for helping us guide families. Because one of the things that families wrestle with is how long do I have with my loved one? And we’re not always that good at predicting that. So this may help give families a time frame for knowing how long the vigil is going to be.”
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by Ray Burow
Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.
If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.
Why some people prefer to die at home
Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.
People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.
Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.
How to prepare for a death at home
Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.
An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.
When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.
Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.
Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.
Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.
There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.
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