Moya Mc Allister / Used with permission.
Moya Mc Allister / Used with permission.
Dying Is Not Surrender
The battle against death can be an admirable one—but only to a point. When the time comes, it’s often in our best interest to lay down our weapons and marvel at the innate wisdom of the end.
If you’re an American, you most certainly are a fighter. That’s what I typically see and hear from almost everyone I’ve treated with a grave illness: Fighting is correct; fighting is always the right thing to do.
I recently helped take care of a frail lady in her 80s who was strategizing about her forthcoming treatment of a newly diagnosed metastatic lung cancer. She had met with her oncologist and with the palliative care team at the hospital and had decided to pursue chemotherapy and radiation. I asked her what made her choose that approach. Without any hesitation, she told me, “I’d rather die of complications and side effects than give up on this.”
What concerns me about this response is not the fighting instinct. That is innate in all of us. What intrigues me, however, is the lengths to which we will go to not have to limit aggressive care—even though the time spent getting aggressive care is often not spent “living,” but is instead spent fighting the disease.
Is there another way of looking at this that would perhaps allow us more time to live without fighting? I believe so.
The Developed World Keeps Death Hidden Away
We are fortunate to live in an epoch of technology and affluence where access to medical procedures and interventions is the norm. We accept, by default, that diseases can be cured or at least kept at bay. Pain is increasingly viewed as optional (at least for some), and suffering is sometimes dismissed as a thing of the past.
Most importantly and profoundly, however, exposure to death has been effectively omitted from our life experience. Without, from an early age, being exposed to dying we never internalize an awareness of life as being necessarily finite or connect death to the reality of life.
Put another way, the person who acknowledges death need not suppress or deny it categorically. The experience of death during our formative years allows death an allocated space in our mental map of what it means to be human, and that makes all the difference. The learned acceptance of death as a part of life was a lesson given to our ancestors early on, so its presence in later life didn’t seem as foreign as it does now.
The Roots of the Fighter Mentality
Consider, too, the psychology of the fighter as she trains for and commits herself to a fight. No fighter comes into the ring looking to lose. Starting early on and persisting throughout training, successful fighters develop an absolute conviction in their ability and need to win.
As boxers in the fight against death, then, we educate ourselves on our enemy. We read up on what he is capable of and look at ways we can overcome his attack. We surround ourselves with coaches who have gone to the best schools, have the winningest records, and are ready to help us attain victory, too. Thus armed, we feel empowered to dominate and let no obstacles stand in our way.
It’s not that an attitude of confidence is bad or that having a world-class medical team behind you is insignificant. But if we solely espouse one philosophy for “the fight,” it can hurt us just as much as help.
One of the hospice nurses I work with explains it this way: “I’m in the fighter’s corner; it’s the 10th round. He is gasping, bleeding. He can’t think anymore; he goes by instinct now, following a hardwired program originating back at training camp that he’s unable to shut off. He’s possessed to fight to the end—to whatever and whenever that end will be. His coaches do anything they can to validate his conviction and energize him to continue.”
These “coaches” are not just medical providers but the fighter’s closest loved ones. Indeed, we expect our beloved to not give in. That is the unwritten (and often unacknowledged) rule. We bank on their charging ceaselessly forward, no matter the odds, for it is unfathomably difficult to imagine life without them.
The fighter feels that expectation; he carries it. He wants more than anything to hold up his end of the bargain, to not let his loved ones down. Often, the more dire the situation, the more determined and encouraging the family becomes—even when the fighter knows, in his heart of hearts, that their faith is based on an illusion.
I know this because I’ve been privy to countless bedside conversations with patients who find themselves in this scenario. Those who are severely ill and not getting better at some point know they are dying. They have become attuned to reality. And when we’re alone, they often confide that they’d lay down their arms were it not so difficult to let their family down.
I say all this not to make those who push their loved ones to “fight to the end” feel guilty—far from it. I know they are acting out of deep love and doing what they believe to be right.
Yet perhaps we can imagine another end to the fighter’s story. Instead of planning his next punch, we can observe his wearied form and tell him, compassionately and empathically, that it’s OK to stop. He’s fought a great fight, leaving nothing behind and letting no one down. He can leave the ring proudly, knowing he did everything he could.
That is, we can change our perspective depending on the reality of the fight. That is true wisdom.
The Innate Intelligence of Dying
As a physician who works in hospice, I have witnessed death many times—and while each loss is unique, a clear pattern can be observed.
The dying person becomes exhausted and socially withdrawn, appetite diminishes, then disappears completely—all signs that internal systems are shutting down. Absent agonizing pain, shortness of breath, or delirium, a need for sleep tends to engulf consciousness as the mind and body surrender to what I have come to see as the innate intelligence of death.
We typically use the word intelligence to denote a conscious ability to use the mind via analysis, thought, and perception. However, the intelligence I perceive in those who are dying is far removed from that. It is a hardwired, untaught wisdom, as old as living itself, that the body has developed over eons of births and deaths.
It is the same ingrained genetic programming that makes an infant take its first breath, cry, and turn its head toward the breast to eat. We have long relegated these inborn behaviors to the medicalized word reflex, but we should not be so cavalier in reducing such profound acts to mere reflex.
What we’re observing is, in fact, the body’s innate intelligence, manifesting itself throughout the life cycle and the body’s physiological systems, invariably in ways that are critical to preserving life. Why, then, wouldn’t that same intelligence be present at our death—at the finality of life’s procession?
The Dying Do Not Need Our Permission
Experiencing a loved one’s dying process is a deeply intense emotional experience, one that leaves an indelible impression on the heart and mind. Sometimes in the active phase of dying, the person lingers longer than feels bearable to those who observe it; many relatives shoulder an immense guilt, convinced that they bear responsibility for their loved one not passing. Indeed, there is a thought within popular consciousness, particularly prominent among those in the midst of losing a loved one, that a verbal release is often all that’s required for a slowly dying person to finally pass.
Perhaps in some cases, this is true. Yet I believe that far more often, the dying person’s lingering has nothing to do with their needs from others and is related to them alone. Those who are dying are immersed in their own world, guided by the archaic intelligence of death. The best thing you can do is respect their journey by allowing them to go through it on their own terms.
Moya Mc Allister / Used with permission.
Moya Mc Allister / Used with permission.
The Enigma of Terminal Lucidity
A surge of unexpected mental clarity shortly before death can be confusing and at times even distressing—unless, perhaps, one is prepared for the possibility of this final farewell.
By Steve Taylor, Ph.D.
Around two years ago, I received a phone call telling me that my mother was seriously ill and would probably pass away in the next few hours. I rushed to the hospital and found my mum in a seemingly comatose state, completely unresponsive. I was told that she had dangerously low sodium levels and that her liver and kidneys were failing.
I sat with her for a few hours. Her condition seemed stable so I went home for some sleep, returning the next morning. Over the course of that day, there was no change. It didn’t surprise me that my mum was proving more resilient than the doctors expected as she had always been physically tough.
But the second morning, when I arrived back at the hospital, something had changed. The nurse told me with a look of surprise, “Your mum is getting better.”
I found her sitting up with her eyes open, breathing more strongly. I asked her how she was, and she shrugged her shoulders and replied, “Not great, Steven.”
I played some of her favorite songs on my computer, and to my surprise, she started singing along softly. She moved her legs and feet in rhythm to the songs. She drank some water and had some soup, for the first time since she had been in the hospital.
The young doctor told me, “It doesn’t seem possible—your mother is dangerously ill but somehow she seems to be getting better. We’ll wait a few hours, and if she’s still like this, she can return to the nursing home.”
My mum remained alert for the next two hours or so. Then she fell asleep and didn’t wake up again. She returned to a comatose state and died early the next morning.
I was naturally dismayed that her apparent recovery was so short-lived. Nevertheless, the brief interaction I had with her shortly before her passing seemed like a blessing and a miracle.
Terminal Lucidity
It’s by no means uncommon for people who are close to death to experience a brief surge of mental clarity and energy. In 2009, Michael Nahm and Bruce Greyson coined the term terminal lucidity for the phenomenon, although other terms have been used, such as end-of-life rallying or pre-mortem surge.
Most strikingly, terminal lucidity may happen to people who have suffered severe cognitive impairment for many years, perhaps due to dementia, a stroke, or meningitis. People who have long been immobile and unresponsive may become agile and alert. People with dementia may regain their memory and other mental faculties, surprising their relatives by recognizing them, remembering details, and speaking coherently.
Current estimates suggest that terminal lucidity happens to around 5 percent of people who die with mental impairment. According to research by Nahm and Greyson, 43 percent of people who experience this brief lucidity die within a day, while 84 percent pass away within a week.
Cases of terminal lucidity have been reported since ancient times. Classical authors such as Hippocrates, Plutarch, and Cicero reported cases of people with mental disorders whose symptoms would disappear as they neared death.
An early-19th-century German physician named Gotthilf Heinrich Schubert reported the case of a man who had been a catatonic invalid for 28 years but regained his awareness and the power of speech during the day before his death. Schubert also described the case of a man who was deaf and mute. He had never learned to speak coherently, but shortly before his death, he began to talk clearly.
Striking Cases
When I asked Michael Nahm, perhaps the leading researcher in this field, about the most striking examples of terminal lucidity he had examined, he mentioned stroke patients who had previously been paralyzed and who sat up in their bed. “They stretched out their arms, called out the name of a deceased loved one, then sank back and died.”
Nahm also cited the case of “an Alzheimer’s patient who had been unresponsive for five years but suddenly sat up in bed and conversed with her daughters as if nothing had ever happened and died shortly after.” Similarly, a recent study by researchers at the University of Pennsylvania found the case of a man with severe dementia who returned to lucidity for around 45 minutes. The man’s caregiver reported that he had a cigarette and a beer, sang songs with the caregiver and others, and talked to them lucidly before going to sleep. The following morning, he died.
The above cases are more dramatic than my mother’s, but they demonstrate the same essential phenomenon: a strange surge of vitality shortly before death which restores mental faculties and physical strength. Then the vitality and clarity disappear, as mysteriously as they arose.
How Terminal Lucidity Affects Those Who Witness It
As I experienced with my mother, relatives and friends tend to have conflicting responses to terminal lucidity.
As Nahm told me, “Many people experience such an unexpected return of mental clarity and the opportunity to say a last goodbye as a true blessing.” However, according to Bruce Greyson, a pioneering researcher in his own right, others may feel dismayed, even betrayed. After starting to believe that their relative was recovering, “they are soon surprised and sadly disappointed in the patient’s subsequent decline back into unconsciousness and death.” According to Greyson, this largely depends on whether the patient’s friends and relatives were previously aware of the phenomenon of terminal lucidity.
In my view, this distinction is in fact a source of hope. It is possible, perhaps even likely, that some of your relatives and friends will experience mental impairment as they face death. If, during their final moments, their fog suddenly lifts, revealing the clear and bright personality you remember from many years ago, know that it is more likely to be a final farewell than a sign of recovery. Armed with this knowledge, the brief moments of terminal lucidity can be experienced as a precious gift—one for which I, at least, can feel immensely grateful.
How to Cope When a Loved One Is Dying
What matters most at the end of life—and six strategies for spending your final moments together wisely.
By Megan Shen, Ph.D.
Walking with a loved one through the dying process is an undertaking of uncertainty, confusion, and grief. We’re forced not only to deal with the impending loss of someone we love but to endure an unknowable wait between diagnosis and death, all while straddling the line between hope and letting go.
In this space of the in-between, caregivers and loved ones often face grueling schedules in and out of hospitals, the overwhelming challenge of seeing a loved one decline, and the
anticipation of the grief of losing that person. Mixed in with all of this is the question: What do I do now?
My research and work focus on helping patients with advanced illnesses and their loved ones walk through the season referred to as end of life: the final days, weeks, and months between receiving a terminal prognosis and dying. This road is long and winding; indeed, even accepting that a loved one is dying takes time—and no shortage of bravery.
But once you move into a space of acceptance, it can create the opportunity to cherish these final moments with a loved one while also receiving support for the overwhelming feelings of uncertainty and grief that accompany this loss. How do we spend this time well without ignoring the inevitable sorrow that lies ahead? There is a body of research that indicates what matters most at the end of life for both patients and their loved ones.
1. Reimagine the classic bucket list. Perhaps the most common thing people think to do when they find out their loved one is dying is creating a bucket list: finally traveling to Europe, going skydiving, seeing Bruce Springsteen one last time. In reality, the dying are often not physically capable of these feats—moreover, they often don’t want to do them.
Ask your loved one if there’s anything they really long to do, with no expectations or pressure. In the early stages of a terminal illness, they may want to complete a major bucket item. If, however, they’re near the end—perhaps in pain or with limited capacity—they may simply want peace and time together.
If this is the case, reimagine the bucket list by creating a space for them to do anything they want, without feeling pressured into doing too much. Watching old home videos while holding hands may be all your loved one needs to experience a moment of meaning before departing.
2. Record moments with them. Take some time to sit down with that person and, if they are able, record old memories together—favorite times, special travels, funniest moments, weddings, births, or other life events. What we most often miss when our loved one is gone are the sound of their voice, their wisdom, their laugh, the beautiful memories we shared together. This exercise not only allows us to connect but also creates a lasting archived imprint.
(If they are no longer able to engage in these conversations because of a progressive illness like dementia or Alzheimer’s, you can use Anne Basting’s “Beautiful Questions,” which are not centered on past memories.)
3. Share how you feel about them. Among the most common regrets after someone is gone is that of having been too afraid to express one’s true feelings. Whether it’s reconciliation that is needed or telling them how much you love and appreciate them, expressing your feelings can create closure and ensure that your loved one knows what they mean to you. And if reconciliation is what you seek, the deathbed is often a place to create that space.
While people worry that these vulnerable moments might scare the patient, often people know they are dying and are looking for this closure. In fact, I continue to hear accounts from hospice nurses of terminally ill patients on their deathbed waiting until their son, daughter, or another loved one comes to say goodbye to them before letting go. This consistent theme seems to indicate that the dying are looking for this closure, too.
4. Take care of yourself. Perhaps the biggest oversight of those walking someone through these final stages is forgetting to take care of themselves. This is particularly true if you are providing care for your loved one directly. Caring for a dying patient is an all-consuming task, but it requires much mental, physical, and spiritual energy. Without creating moments to care for yourself, you are at risk of burning out.
If possible, create time to care for yourself, whether that’s through meditation, journaling, or listening to your favorite music. Often, there are several moments throughout the day when your loved one is sleeping or resting. There can be an overwhelming urge to stay by their bedside the entire time, but if you can step out for a small break, it can help fuel you. If possible, invite others to share in the responsibility.
5. Receive support for anticipatory grief. While most of us are familiar with grief after the loss of a loved one, few of us expect to experience grief before they die—yet this is common. With anticipatory grief, you are looking ahead toward the losses yet to come: loss of a loved one, loss of a relationship, and loss of a family role. In short, you are facing the loss of the future you planned to live with that person.
While you can often process the finality of death when grieving after someone dies, anticipatory grief holds you in a confusing and exhausting space of having hope but also letting go. This is exhausting, leaving many confused about how to cope. Reach out for guidance throughout this process, whether from family, friends, mental health professionals, or the hospice and palliative care teams working with your loved one as they die.
6. Prepare yourself for the actual death. This step may be the hardest, but understanding what is likely to come near death can help immensely in transitioning to the final days of your loved one’s life. Prior research indicates that being prepared for the death of a loved one is one of the most important factors in determining how you cope. Often, your loved one will become more sleepy, eat and drink less, and withdraw more. They may experience pain, breathing issues, and sometimes confusion. This is no easy transition, as it becomes more challenging to spend engaging and meaningful time with them.
As you prepare, don’t hesitate to lean on others for support, be it emotional, practical, or spiritual. Friends and family, as well as supportive services like hospice care and social workers, can be nothing short of invaluable as the end draws nearer.
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