Category: Preparing for Death

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

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

Making the decision to ‘transition to comfort’

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

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

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

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Lamas, this kind of death is planned for, occurring only after the medicines and machines keeping the patient alive are withdrawn.

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

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

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

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

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

The ‘principle of double effect’

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

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

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

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

Complete Article ↪HERE↩!

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

By By Daniela J. Lamas

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

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

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

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

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

But there’s a third form that dying takes, when it becomes clear that the life that we can offer is not one that would be acceptable to the patient. It is a death that is made imminent only by the withdrawal of medicines and machines — a death that we plan for. It is a strange thing to plan a death, but I have come to understand that this is part of our work in the I.C.U.

A few months ago, I took care of a cancer patient in her 70s who had been intubated because of a flare-up of an underlying lung disease. In the moments before the anesthesiologists put her to sleep and placed the breathing tube down her throat, she had given her son instructions: Give her a chance to get better, but if that failed, she did not want a tracheostomy tube for a longer-term connection to the ventilator or months at a rehabilitation hospital. Her cancer was progressing, and that was not the way she wanted to spend the last year of her life.

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

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

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

As gently as I can, I tell them that when they are ready — as anyone really can be for any of this — we will stop the medications and the tubes that are prolonging life. I tell them that the bedside nurse will give other meds, often morphine or a similar drug, to make sure that their loved one is not in pain. Sometimes they ask if this medication will hasten death, and I explain that it can, but that our primary goal is always to relieve discomfort.

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

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

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

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

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

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

Complete Article ↪HERE↩!

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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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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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Cancer treatment took my mojo. Hospice gave it back

The author with her grandchildren, Lily and Ella, at Sofra in Cambridge, June 2022.

By Grace Segran

Eating is one of my greatest pleasures, and it was the first thing to go. Everything I put in my mouth tasted metallic. My taste buds were distorted. The nausea wouldn’t go away with any medication, not even marijuana. I was in starvation mode.

When the cancer had returned after 23 years to finish its job, I thought the targeted hormonal therapy wouldn’t be as drastic as the chemotherapy I had the first time.But it was worse. The daily pill I was prescribed to take indefinitely — or until such time when it no longer worked — subverted my bodily functions.

My blood counts plunged to critical levels. I had to have two pints of blood monthly to bring up the hemoglobin to carry more oxygen through my body. My liver enzymes rocketed, indicating toxicity. By January this past year, I was in bed all day, getting up only to use the bathroom.

I felt like I’d lost my mojo. My spark. My life.

In March, a nurse practitioner visited my infusion room at the oncology facility where I was receiving intravenous rehydration and asked if I would consider transitioning to hospice. I had no clear picture of what hospice was, except that it’s where you go when you are about to die. But I trusted my medical team’s judgment.

The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice. (Courtesy Grace Segran)
The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice.

I went into hospice. And to my surprise, that’s how I got my mojo back.

I was taken off all cancer drugs and cared for at home by the hospice medical team. They also supported my daughter, Elizabeth, and taught her how to care for me.

Elizabeth came by with newborn baby Lily, every day, and took care of my personal needs. Then we would go out for a lunch or at teatime, or take a drive to nearby towns. The short wobbly walks to the car while holding on to her arm soon became more steady, and I could walk further as my muscles became reconditioned. I began to pick at my food rather than reject it outright. A month later, I no longer needed the electric cart in Target, or for Ben, my son-in-law, to lift me into the car seat or out of the dining chair.

About six weeks after stopping the drugs, I woke up and I wanted an egg salad on sourdough bread and iced oat milk latte. For lunch, I wondered if we should do the dim sum carts at Joyful Garden. Or rasam and thosai at Dosa n Curry. We should definitely stop at Sofra on the way back for lemonade and tahini shortbread. The nausea and aversion for food was gone. I was delighted to be eating again and entered into it with abandon, especially in the company of family and good friends.

The Segran women -- from left, Elizabeth, Grace, Lily and Ella -- at a church park party, June 2022. (Courtesy Grace Segran)
The Segran women — from left, Elizabeth, Grace, Lily and Ella — at a church park party, June 2022.

With all the lunches I was booking with friends whom I’d not seen for months, I called Laura, my hairdresser, for an appointment. My hair had grown unruly now that the drug wasn’t curtailing its growth.

“You remember, right? Not too short and lots of texture,” I told Laura. When I got home, I dug deep in the closet for summer dresses and shoes. I had places to go!

I took baby steps towards traveling, another love of mine. Over a month, Elizabeth, Lily, and I took overnight trips to Newport, Rhode Island, Portsmouth, New Hampshire, and Portland, Maine, hoping to veer towards the airport after that and venture on to Chicago and New Orleans.

I started writing again. I’d scoured the internet but couldn’t find anything on first-person accounts about dying and hospice (always written by caregivers), so I wanted to write about that. And here I am.

My life is not perfect. I don’t walk nine miles a day as I did pre-cancer. I limp badly, and it’s a good day if I can make a quarter mile. I’m in bed for days after an overnight getaway. I don’t feel like seeing anyone some days. But I have the support of the beloved hospice team who comes to my home to help with my disabilities and take care of infections and pain, enabling me to live the life I want for as long as I can.

The window will close at some point, and I will go into decline as the cancer takes over. But I’m grateful for this interregnum. Hospice care has given me back my life, for now. I don’t know when the window will close — none of us do, really — but I’m cherishing every moment while it lasts.

Complete Article ↪HERE↩!