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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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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 https://www.cmaj.ca/submission-guidelines or contact Victoria Saigle (Victoria.saigle@cmaj.ca).

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End of Life Stages Timeline

— 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.

Physical Changes

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.

Physical Changes

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.

Summary

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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Researchers Identify 8 Signs of Impending Death

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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Volunteering for a Jewish burial society showed me how to live a more sacred life

The work of a Chevra Kadisha is done without promotion or fanfare, and is solely for the benefit of the deceased

By Hannah Lebovits

The first time I touched a dead body was in a sanitized room inside a Dallas funeral home. I was stationed next to Ana’s toenails, with a small toothpick and a Q-tip. While firmly holding onto her foot, I silently cleaned away any dead skin, dirt or debris that might be found under her nails or between her toes.

Though Ana’s primary residence was several hours from the city, and she was not affiliated with any local synagogues, a burial plot in Dallas had her name on it. In Dallas, Ana’s family requested a Jewish burial service, including a plain, pine coffin and a ritual cleansing. The funeral home alerted the local Chevra Kadisha, the organization that prepares bodies in accordance with Jewish law, to perform the tahara or purification rituals, and, along with four other women, I volunteered.

Jewish death and Jewish life seem vastly different to me since joining the Chevra. Jewish life gets more and more public every day. Last year, an online Jewish organization paid for prime advertisement space in Times Square to fight antisemitism. Netflix offers Jewish experiences on demand, including the nuanced, scripted “Shtisel,” and the unabashed, reality-TV show “My Unorthodox Life.” Meanwhile, on Instagram, TikTok and Twitter, one can find countless accounts dedicated to informing the public about Jewish life and interfaith experiences.

Yet, while Jewish life seems to be increasingly visible, Jewish death rituals remain private, intimate and authentic. Narcissism and self-promotion are left at the entrance to the funeral home. Inside the tahara room, individual opinions, personal comfort and even your schedule are entirely secondary to the needs of the deceased. The experience is calming and comforting specifically because it is not about you. It’s a lesson for all of us who consider ourselves to be representatives of and in service to Jewish life.

If we can take a few moments to disconnect from the noise and selfishness of everyday living and instead focus on accountability — particularly in our interactions with those who may never repay us — we can maintain a certain purity of action in living an authentic Jewish life.

Prior to walking into the tahara room, I helped to prepare the casket. The first thing we realized, upon opening the box, was that there were not enough wood shavings to properly prepare her casket. Ana’s head was to be propped up on a pillow filled with wood shavings, and her body to lie on a sheet covering an arched bed filled with more wood shavings. We laid out the burial shrouds across the aron (casket) and waited for a funeral home manager to find more of this important material, but no additional wood could be found.

We asked her to keep some on hand for the future, set up what we had and hurried into the tahara room, unwilling to make the body wait for even another second.

After cleaning Ana’s nails and checking her body for any open wounds, I picked up a pot full of water. Starting with Ana’s hair, I poured the water from the pot onto her body as another member of the Chevra Kadisha washed her with a simple white linen cloth. We made our way down the right side of her body as another pair of women did the same on the left. Her body was cold to the touch.

Towels covered her body, and we lifted those towels only to reach a specific spot. Once the area was cleaned of any residual dirt or blood, we covered it again. Any bleeding that we had found during the process would be collected and buried in the casket with her.

I watched as her head remained elevated the entire time. Ana could be seen yet she herself could not see, and as such, we kept her face and eyes covered, out of respect.

Before washing Ana, I washed my own hands. In line with the ritual practice, I poured water from a cup onto my right hand, making sure the water spread from my wrist to the ends of my fingers. Then, I did the same for the left hand. I repeated this three times, in silence. After Ana’s body was cleaned, we washed again, replaced our gloves and filled three more buckets with water.

Ideally, Ana’s body would be entirely submerged in a mikvah. However, since that is not feasible in our community, we are required to pour water in a manner that will ensure that the flow does not stop, simulating a complete immersion. Ana’s body was completely uncovered as three women poured the buckets of water over her, beginning with her head and ending with her feet, making sure that the flow from the bucket was continuous. After the three women poured, we all proclaimed Ana’s purity, and one woman read the prayers. We then immediately covered and dried Ana’s body and began to dress her in burial shrouds.

Local traditions vary across places as different leaders (the “Rosha”) will follow specific customs they’ve been taught and have found to work. The practices followed by our Chevra include specific outlined rituals, local traditions and tikkunim, or “perfections.” A tikkun is a practice that assists in the performance of the ritual and serves as a reminder to the members of the Chevra that they must treat the body — which once held the soul and is now in transition — with the utmost respect.

One tikkun our Chevra keeps is placing a sign with the deceased’s Hebrew name in the tahara room, so that there is no time lost waiting to recall the name as we say the prayers. While dressing Ana, we turned the garments slightly inside out so that Ana’s body would not have to be moved more than necessary as we pulled them up her body — another tikkun we performed.

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What to expect when someone is in the last few days of life

The dying process is unique to each person, however there are a few common changes that happen to almost everyone when they are in the last days of life. Some of these might look distressing, but most of the time the person is not in any pain, and they are just a normal part of dying.

Loss of appetite

When someone is at the end of life they will typically have less appetite, as their need for food and drink reduces. If they stop drinking and their mouth looks dry, this does not necessarily mean they are dehydrated.

It might be too much effort to eat and drink. If this is the case you can offer sips or small bites, provided they are conscious and can still swallow. You can also help someone with a dry mouth by:

  • offering a drink through a straw (or from a teaspoon)
  • moistening the mouth with a damp sponge – special kinds of sponge are available for this purpose (the person may bite on this at first, but keep holding it, as they will let go)
  • placing ice chips in their mouth
  • applying lip balm

Changes to breathing

As a person becomes less active towards the end of their life, they need less oxygen. Breathing may become shallower and there may be long pauses between breaths. They might yawn frequently, as this is a natural response to draw more oxygen into the body.

Their breathing can make a noise because they are not able to properly re-absorb fluids in their chest or throat, which can cause a rattling sound. This may be upsetting to hear, but it doesn’t mean they are in distress or need oxygen. It can be a bit like snoring – it affects those who hear it more than the person who is making the sound.

If their breathing is very loud, it may be helpful to change their position so they are on their side, as long as this doesn’t disturb them. You can ask to be shown the best way to move them – ask about sliding sheets.

The doctor or nurse may also suggest medication to reduce the fluids in their chest or throat. This is not always needed, and it does not always make a difference.

Anxiety can cause their breath rate to increase a little. Breathlessness can be frightening but simply sitting with them so they know you are there can help.

Needing more sleep

They are likely to spend more time sleeping, and will often be drowsy even when they are awake.  They may also drift in and out of consciousness. Some people become completely unconscious for periods of time before they die – this could be for a short period or as long as several days.

They may seem less interested in what is going on around them, and have less energy to take part, but this does not mean they can’t hear you.

You can carry on speaking quietly to them. You could also try letting them know you are there in other ways, for instance by holding their hand, reading to them, or playing their favourite music.

Restlessness

Some people can become restless in the last few days of life. They will usually become calm again before they die.

They may appear confused and not recognise familiar faces, and even see or hear people or things that are not actually there – for instance, they may see pets or people who have died.

While this can be upsetting it is not a sign that they feel differently about you. This can be caused by medicines or changes in the chemical balance of the brain, or as a result of drifting in and out of sleep so they are unable to clearly distinguish between what is real and what is not.

If they are agitated, often just sitting with the person can help to calm them down. You can also help by:

  • speaking clearly and audibly
  • reminding them who you are (and being prepared to do so repeatedly)
  • keeping their surroundings calm with few changes in noise level
  • trying not to correct them if they say something wrong, or insist on them getting things right, as this may be upsetting for you and for them

Agitation could also be a sign of constipation or difficulty passing urine. Ask the medical team if you have any concerns so they can rule out any underlying causes and if necessary prescribe medicine.

Changes to skin

Changes to the metabolism of the dying person can cause their breath, skin and body fluids to have a distinctive smell similar to that of nail polish remover. If a person is dying from bowel or stomach cancer, this smell might be quite strong.

The person’s hands, feet, ears and nose may feel cold. Their skin may also become mottled and blue, or patchy and uneven in colour. Occasionally, a person’s hands or other body parts may swell a little.

This happens due to reduced circulation and is normal. As the body’s functions slow down, blood may coagulate or pool, particularly at the base of the spine, which can cause patches that look like dark purple bruising. This is not usually painful or uncomfortable. Gentle massage can help, ask the nurses to show you how to do this.

Losing control of bladder or bowels

When someone is in the last few days of life the muscles in their bladder and bowels relax, which can cause them to lose control of their movements. This may be distressing to see, and they might feel embarrassed.

You can ask a nurse to show you how to keep their bed clean and comfortable. You can also ask for incontinence pads or a catheter – a long thin tube that can be put into a person’s bladder to drain urine.

It is also common to have fewer bowel movements if they are eating less, and urine may get darker as they drink less.

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Health-care providers and MAID

— The reasons why some don’t offer medically assisted death

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Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from 2019 to 2020 highlights a 34.2 per cent increase in Canadians accessing MAID.

Bill C-7, which passed in June 2021, changed the eligibility criteria by removing the “natural death has become reasonably foreseeable” requirement. As a result, more Canadians may qualify for MAID.

During the pandemic, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least one Canadian province temporarily pausing referrals for patients wishing to access MAID.

Non-participation in MAID:

Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID.

Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from 2019 to 2020 highlights a 34.2 per cent increase in Canadians accessing MAID.

Bill C-7, which passed in June 2021, changed the eligibility criteria by removing the “natural death has become reasonably foreseeable” requirement. As a result, more Canadians may qualify for MAID.

During the pandemic, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least one Canadian province temporarily pausing referrals for patients wishing to access MAID.

Non-participation in MAID:

Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID.

David Lametti, Minister of Justice and Attorney General of Canada, delivers a statement on Bill C-7 on Parliament Hill in Ottawa in March 2021. The bill removed the criteria of a reasonably foreseeable death from MAID eligibility.

As an end-of-life researcher and registered nurse, I investigated this question with the support of my thesis committee. That research highlighted the complex and interwoven reasons why health-care practioners may not participate in MAID.

These factors can be divided into internal and external factors, but it’s also important to recognize that there are conscience and non-conscience-based factors that influence non-participation.

Internal factors

Several personal, or internally originating, factors influenced non-participation. These included a general discomfort in caring for dying patients as well as the provider’s previous personal and work experiences related to death and dying. Also, MAID did not align with some practioners’ approaches to end-of-life care.

Other factors that influenced non-participation included practitioners’ views of their professional duty. MAID did not align with some practitioners’ faith or spiritual beliefs, and some reported they could not imagine being at peace with the decision to participate in medically assisted dying.

Health-care practitioners also considered how they were likely to respond emotionally to participating in MAID. They had concerns about the future impact of MAID participation in terms of their potential risk of post-traumatic stress disorder and burnout.

External factors

  • Health-care system factors: The health-care system influenced non-participation. This included working for an organization with an institutional conscientious objection to MAID and the uncertainty of working within a rapidly changing legal landscape in terms of MAID regulation. There were also concerns about adequate access to alternatives to MAID, such as palliative care and chronic care support at home. Some nurse practitioners reported that they did not participate in MAID because of limiting job or practice descriptions at their current employer or a lack of billing codes that would enable them to be paid for these services.
  • Community factors: Reasons for non-participation also included gauging the “community conscience,” perceiving a lack of openness in end-of-life discussions and the dominant religious beliefs of the community. Health-care practitioners were concerned about the impact of having to reduce or cancel other services in an already busy practice to make the time to provide MAID care to a single patient. They were also unsure if or how culture influenced the patient’s perception of MAID, or the patient’s perception of them as health-care practitioners if they participated or if participation would alter the community’s trust in them.
Cropped image of a person in a white coat standing behind a seated older person, holding their hand
The health-care practitioner-patient relationship influenced non-participation. A long relationship with the patient could make participating in MAID uncomfortable and challenging.
  • Practice factors: For some health-care practitioners, their decision to not participate in MAID was influenced by a lack of policy and program knowledge or skills to participate in the MAID assessment or provision. Another reasons was adequate pay for the time and overhead costs involved. Others said they lacked understanding about the optimal care model for MAID (such as whether MAID is provided by family medicine practitioners, end-of-life care practitioners or MAID teams). Others identified that MAID was outside their clinical interest and practice strengths.
  • Visibility factors: How MAID participation would be viewed by colleagues, clinic staff and patients also influenced the non-participation of health-care providers. This included fear of colleagues’ disapproval, fear that participation would harm patient relationships and their relationship with their faith community and a fear that participation would be interpreted as giving up on patients.
  • Risk factors: Health-care providers contemplated the risk to themselves, their practice and their families. Specifically, the risk associated with professional discipline if the patient or patient’s family disagreed with their assessments, the risk of colleagues making their professional lives difficult and the perceived risk of personal physical harm or violence to themselves or their families.
  • Time factors: Concerns about competing clinical demands, time-limited appointments that do not accommodate end-of-life conversations and lack of time to offer quality MAID care influenced non-participation as well. Some health-care providers did not wish to take on new practices at their current career stage (for example, close to retirement) and others noted a lack of time to take continuing education in MAID.
  • Patient’s family factors: Other factors that influenced non-participation in MAID related to the patient’s family. Health-care providers expressed concern that participation would impact the care provided to other family members and that there was a lack of support for the family before, during and after MAID. They also considered the potential challenges of inter-family conflict around the patient’s MAID choice and the impact of the MAID death on future family dynamics.
  • Patient relationship factors: Another factor was the health-care practitioner/patient relationship. A long relationship with the patient could make participating in MAID uncomfortable and challenging. Others noted that a long history with a patient would support open discussions about their reasons for not participating in MAID.

Support for health-care practitioners

My research outlines a model of non-participation in the formal MAID processes. In terms of conscience and non-conscience-based factors, it’s vital to differentiate between a conscientious objection to MAID and non-participation in MAID because health-care practitioners require different support for these.

Steps that might support health-care practitioners who are considering participating in MAID include clarifying regional models of care, which vary between provinces and territories.

Practice-focused MAID education could include not only policy and legal aspects but also pragmatic issues such as obtaining medications and administrative requirements, as well as discussions about relevant factors like communication skills and religious knowledge.

Recognizing the practice issues, time and relationship investment required to provide MAID, and developing fair remuneration policies for health-care practitioners who provide it, may support more participation in MAID.

Supporting health-care practitioners will be vital to a sustainable, healthy health-care system for Canadians.

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