An end-of-life doula’s advice on how to make the most of your time on earth

Life is short. Here’s how to cherish every day of it.

By

“I want a party in the woods with an all-night campfire. I’ll be off to the side in a sleeping bag, nice and cozy. There will be s’mores and cocktails. My friends can come and go, saying goodbye however they want, or just sitting quietly with me and holding my hand. Nobody should touch my feet, though. I hate having my feet touched. A playlist of my favorite songs should be on repeat. I’d like to die as the fire burns out at dawn. Lights out and lights out, you know?”

I’m on Zoom and a chaplain from Iowa is describing her ideal final hours of life. We’re training to become end-of-life doulas, and this morning’s assignment is to help each other talk through a final hours ritual. It’s one of many exercises designed to confront us with our own mortality, so we can leave our own feelings about death at the door before we step across someone else’s threshold to help with theirs.

End-of-life (EOL) doulas are at the opposite end of the life cycle spectrum from birth doulas. They provide non-clinical care (emotional, logistical, and physical) and help with planning; engage with life reviews and legacy work; and provide support for family and friends so caretakers can bring their best, rested selves to support their dying loved one.

I knew training to become a doula would change my relationship to death, but I didn’t anticipate how it would transform my day-to-day life. Like others, my smartphone use skyrocketed during the isolation of the pandemic. Even after those panic-inducing first months in NYC, I still found myself using my phone as a constant distraction — lurking on Instagram, clicking every New York Times alert, obsessively refreshing my email like it was a Vegas slot machine.

I didn’t become an end-of-life doula to fix my fragmented focus. I did it because Covid-19 made death suddenly feel very real and very present. But I found that a deep dive into death work profoundly clarified my priorities, and has helped me spend time in ways more aligned with those priorities thanks to the soul-shaking understanding that our time here is truly limited.

Here are three components of EOL doula training that have been useful in my never-ending quest to live a more present and focused life in this Age of Endless Distractions. Think of it as a looking-back-from-your-imagined-deathbed approach to living — which sounds morbid in theory but is empowering and enriching in reality.

Imagine you have three months to live

I’m not going to lie to you: This exercise isn’t going to feel great! Please do it only if you feel equipped to engage with feelings of grief and loss. I recommend having someone you trust read it to you, someone who also has the emotional bandwidth and who is not currently grieving. You’ll need a pen and paper. Choose a time when you’re not going to feel rushed and are in a comfortable space. Take some deep breaths. Settle in. Here we go.

Write down your five most-prized possessions, your five favorite activities, your top five values, and the five people you love the most.

Close your eyes. Imagine you’re at a doctor’s office. You’ve just been given a terminal diagnosis and told you have approximately three months to live. Sit with that news. Breathe. Open your eyes. Cross any four items off your list.

Close your eyes. You’re back home with your spouse or friends or children or pet. You have to find a way to tell those you love: “I’m dying.” Breathe. Open your eyes. Cross another four items off your list.

Close your eyes. You’ve started feeling the effects of your illness. You can’t get around as easily. Your sleep is restless. You’re nauseated from the medications you’re taking. Breathe. Open your eyes. Cross four more items off your list.

Close your eyes. You’re mostly confined to your bed now. Your loved ones have gathered because they know they will soon have to say goodbye. They drift in and out of your bedroom, or wherever you have chosen to spend your final days, holding your hand, perhaps playing music you like or reading aloud your favorite book. Breathe. Open your eyes. Cross four more items off your list.

Close your eyes. You’re in bed, eyes closed, unable to move much or to speak at all. You sense that you’re going to die soon, and you wonder what will happen when you go. What are you thinking about in these final moments? Breathe. Open your eyes. Cross the remaining four items off your list.

Whew. You did it. Make sure to give yourself as much time as you need to regroup before you reenter the “real world.” Sit still. Focus on your breath. Drink lots of water.

When I did a version of this exercise, I was amazed at how real loss and grief felt as I crossed items off my list. (There is nothing quite like imagining your kid’s life without you to bring on The Sobs.) I don’t want to overstate the impact of imagining loss versus actually experiencing it, nor minimize our individual, multi-faceted responses to real grief, but research has shown that stressful life events can change us, and that includes clarifying our values and priorities. Maybe you, like me, tapped into some of that clarity during this exercise.

A few days after I tried this exercise, I rewrote my Top 20 list on a notecard. I keep that notecard by my laptop and look at it often. It has been an unexpectedly powerful reminder of what and who I love, of who I am and want to be. Each day I think about how to fit in as much as I can from this list, even if I only have a few free minutes to myself. It has become the framework that informs my daily to-dos and balance of urgent/important tasks.

Practice deep, active listening

A good deal of EOL doula work is listening work. The deep, active listening doulas are trained for involves holding back our own stories, comments, and feelings. Doulas don’t tell a dying person what to do. They don’t try to fix the situation. They ask open-ended questions and understand that how people move through the dying process is up to them. This kind of listening requires empathy and restraint. It insists on being free from distractions, external (cellphone notifications, I’m looking at you) and internal (like that voice inside your head that wants to judge or give advice).

As the person at a party who makes approximately 30 seconds of obligatory small talk before diving into deeply personal conversations with strangers, I assumed I was custom-built for this part of being a doula. But it can be difficult to stick to open-ended questions, to sit comfortably in silence, or to resist giving well-meaning but unsolicited advice.

So, I’ve been practicing. A lot. This kind of listening has altered what I can only think to call the texture of my time. It has made me more present, empathetic, and curious in conversations and relationships.

The next time you’re having a conversation with someone who is sharing important information or struggling in some way, you might try it. Ask open-ended questions. “How are you feeling about X?” “Do you want to talk more about Y?” Give their answers space and silence to settle.

Reflect back what you think you’ve heard. Be open to being wrong about what you think you’ve heard. Be supportive, but don’t try to fix the situation with advice or talk them out of what they are feeling. Avoid platitudes like “give it time” or “it wasn’t meant to be.” Even “I know how you feel,” well-intentioned though it is, often misses the mark because we mostly don’t know exactly how someone else feels or entirely understand their specific situation.

Of course, not all our conversations require this therapist-like level of restraint, but challenge yourself to consider that plenty of them could benefit from a touch more deep listening.

Legacy projects in the here and now

Doulas often help with legacy projects: autobiographies, letters to loved ones, art projects, and more. These projects memorialize a person’s passions and creativity, values and contributions, and — spoiler alert! — you don’t have to wait until you or someone you love is dying to work on one.

Complete Article HERE!

‘My husband’s death left me with so much regret, I don’t want you do make the same mistake’

A simple conversation could have changed so much…

Melissa Reader shares her experience of poor death planning to help others have a better experience.

By Melissa Reader

After losing her husband Mauro tragically young, Melissa Reader is personally motivated to help more Australians talk about the end stages of life. Because accepting that death is a part of life is the first step to ensuring the final stages of living are done with dignity, and surrounded by love.

It wasn’t long ago that these topics were shrouded in stigma. And while we have some way to go in making these areas of life safe topics of discussion for everyone, there’s no doubt that over the last 10 years we’ve come a long way.

So it’s still surprising that we have allowed death to remain a taboo subject. Death is as universal as life – we all die. And just like mental health, sex and identity, talking about it openly normalises the experience and helps to make it the best it can be, for everyone involved.

Avoiding the topic

It’s a known fact that ‘what we resist, persists’, so our fears around death and dying heighten and become more difficult to address as time goes on.

The lack of communication at the end of life leads to a lack of preparation; right now in Australia, only 14% of us have a plan in place for how we want to die. The last stage of life and the end of life is never going to be easy – but it can be better, and learning to talk, plan and care for each other when the time comes is key. Or we end up with a big gap between what we hope for, and what happens, which is what happened in our family.

If we had managed to have the important conversations, like how to make the most of the time ahead, we might have made different decisions.

How my family changed forever

We were a very normal, happy, busy family, with three children. Our youngest child, Orlando, was just nine months old when my husband Mauro’s diagnosis came completely out of the blue.

He was 40-years-old. Through the 15 months of his illness, we did our best to navigate life, family needs and the confronting and ever-changing demands of his cancer disease. But we avoided having honest and open end-of-life conversations as a couple, as a family, and with his medical team. We didn’t understand, or maybe we couldn’t accept, that he was terminally ill – that he was dying.

The regret never fades

I still feel so sad about the way Mauro spent the last stage of his life – in and out of the hospital, away from his family, and his home. We didn’t think about how to really make the most of those precious months together. We never accessed palliative care, which would have been so helpful, and we weren’t in any way prepared for his death.

It all flew by in a painful blur and suddenly, I was standing beside him in the ICU, reeling, and finally realising that he was about to die. Realising that we’d missed so many moments for love, connection, memory, and legacy. Realising that Mauro was going to die in a cold, clinical and unfamiliar setting – something he wouldn’t have wanted.

We were left without a husband, and a father, and I was holding many deep regrets about the way the last stage of his life played out.

How to talk about death, better

Honesty and kindness are not mutually exclusive. By having more open and candid conversations, and planning together where everyone is involved is the key to making the experience the best it can be.

Unfortunately, life doesn’t offer us a chance to re-do this scenario. My advice is this: be gentle, be brave, and try to open more conversations with family and friends about what’s most important in the last stage of our lives.

Remember, it’s your compassion, not your vocabulary that matters – there are no perfect words. Rather than getting caught up in trying to find the right things to say, my advice is to instead focus on timing and tone. If you get these things right, the words tend to find their own way. Take your time, use gentle and well-spaced questions and be prepared to revisit conversations over a few sittings.

And if you need support with where to start or how to unravel what comes of these chats, you can always reach out to the Violet Initiative. We’re a national not-for-profit that’s helped thousands of Australian families navigate this life stage.

A personal pledge

I made it my life’s calling to create a safe space where family, friends and colleagues of someone who is in the last stage of life can go for support, so they know that they aren’t alone and that help is available.

So next time you’re catching up with friends and you find yourself discussing your mental health, take a moment to think of some of the end-of-life conversations that might lie ahead, and make a pact to approach these with the same openness and honesty.

Complete Article HERE!

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

By By Daniela J. Lamas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Thanatophobia

— What It Is and What Causes It

By Mandy Baker

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

What is thanatophobia?

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

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

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

What are the symptoms of thanatophobia?

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

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

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

Learn more about panic attacks and anxiety.

What causes thanatophobia?

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

Thanatophobia appears to be more common in those who have:

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

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

How do you treat thanatophobia?

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

  • therapy
  • medication
  • self-help techniques

Therapy

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

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

Medications

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

Medications that your doctor may recommend include:

  • antidepressants
  • tranquilizers
  • beta-blockers

Self-help

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

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

Other self-help techniques include:

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

Summary

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

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

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

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

Complete Article HERE!

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).

Complete Article HERE!

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.

Complete Article HERE!

Researchers Identify 8 Signs of Impending Death

Findings could help families prepare and aid in end-of-life care choices

By

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.”

Complete Article HERE!