Eight Lessons from the End of Life

In the 21st century, many of us are living longer, dying more slowly, and, more important, dying differently than our ancestors. Based on her book, the author offers advice on handling a prolonged dying process for which we have no rituals or best practices. 

Most of us are unprepared. 

Elder-care workers are the exception. These people work with dying people and their loved ones daily. They are nurses’ aides, administrators, family care providers, and others working in such places as hospices and continuing care retirement communities (CCRCs). Their work is physically, medically, emotionally, socially, and spiritually demanding almost beyond compensation. Yet those who do it say it also can be rewarding beyond measure, leaving them strong, self-assured, grateful, and at peace with life itself. I spent two years working with and interviewing 50 of these workers to understand how we die now. Here are the lessons I learned from them about navigating the transition from life to death: 

1. Avoid overtreatment.

“It’s insane the number of [dying] people whose families try to keep them alive,” said a CCRC chaplain. “The vast majority of my work is normalizing the end of life as well as death, and being able to celebrate it.” 

Workers told horror stories about residents who were encouraged to fight desperately against their own mortality in what one CCRC administrator described as, “the relentless pursuit of life at any quality.” He and other elder care workers say aging adults are at risk for excessive medical interventions; many such workers have made plans to ensure that they would not be overtreated at the ends of their lives. 

When faced with end-of-life issues of a loved one, they suggest: 

• Come to grips with death so you don’t make choices that, in trying to avoid it, you later regret. 
• Be aware of the downsides of potentially life-extending medical technologies and extreme medical treatments. Often death comes anyway, amidst or immediately following a difficult and painful procedure. 
• Don’t pursue such medical interventions in lieu of saying good-bye, acknowledging that the end is near,  or taking the opportunity to celebrate the dying person’s life. 

2. Make choices. 

Elder-care workers say it is often family and friends of the dying, not the dying person, who seek more time at any cost. As one worker explained: “Everyone is going to die and leave this world, and health care is not going to change that. … But we have choices in how we want to do it.” 

Here’s how to help the dying exercise those choices:

• Avoid denial. Denying the inevitability of death  means that when it comes, you’ll be unprepared —  and in crisis. 
• Realize that those who are dying are often more accepting of and familiar with death than their younger family members, due to their own experience of having lost loved ones and friends. Take your cue from them: Revere — or at least accept — the cycle of life.
• Shift your focus away from the heroics and drama of fighting terminal illness and toward an acceptance of death that is planned, peaceful, and deliberate.  
• Recognize that the dying have choices. These include intentionally letting go, declining some available treatments, and acknowledging, even welcoming, death’s approach. 

3. Be not afraid.

Hospice has an official definition of a good death. It includes saying good-bye, asking for forgiveness, forgiving others, and having some say in how one’s life ends. Elder-care workers also have a consensus about what constitutes a bad death: It includes the family of the dying railing against the dying process, a dying person who is unable to express their final wishes, and an atmosphere of chaos and crisis. This traumatic, dysfunctional scene, workers say, is often caused by fear of pain and fear of the unknown. Take away the fear, and death can be a much more peaceful, controlled, and intentional leave-taking. And the best antidote to fear is knowledge. 

Elder-care workers tell the dying and their families:

• Pain can be managed by medication self-administered by the dying, allowing them a final measure of both comfort and control.
• Death often comes in stages, with recognizable signs that signal the transition from life to death. Knowing where they are in the dying process can allow those who are dying and their loved ones to understand options, make choices, and make the best use of the time they have together.
• Fear and crisis need not dominate, or even characterize, our final days and hours.

4. See it coming. 

For most of us, death seems unpredictable and frightening. But the dying process often has identifiable steps. They may include: 

• A diminished interest in details about the wider world, such as sports scores, weather, what’s on the menu, the date, and the news. 
• Interest in eating declines. 
• Talk of going on a journey. 
• Even among those who have been withdrawn for a long time, there are moments of clarity or clear speech — often brief. (Some call these “awakenings.”) 
• Toes curl. 
• Knees and lower legs mottle and start to spot. 
• Extremities begin to feel cool; skin may turn grayish or bluish. 
• A lack of thirst and a declining interest in drinking. 
• The person loses the ability or focus to clear saliva from his or her airway, producing a “death rattle,” or cracking sound in the throat. 
• The dying person reaches up and out.
• Breathing slows and may even seem to stop, followed by very quiet sighs, until breathing finally ends. 

Elder-care workers say:

• Watch for these signs. Once they have begun, so has active dying. 
• Use these signs to take away the surprise of death, to help the person make final choices and the best use of the time remaining. 
• Once these signs are evident, don’t pressure the dying to “stay longer.” Many workers witnessed dying residents “holding on” for a particular purpose — for a beloved daughter to return home from overseas, for a wedding, for a grandchild to be born. These acts of will and control in the very weak and dying convinced many workers that family members could turn a good death bad through undue pressure. 

5. Make a plan.

All of the end-of-life workers I interviewed — every single one — talked about the need to make plans for death; 48 out of 50 had already made their own — elaborate, detailed, and in almost all cases, written down. Making plans, they said, means a much greater chance that their wishes will be honored and that their passing will be peaceful. 

One doctor I interviewed said she fears avoidance of death, not death itself. “Death is just the natural progression of life. And if you’re thinking about, if you’re worried about, loss of function or loss of independence, do something now to make a difference! Keep yourself in better shape, make appointments for support in your older years. You know, if you think your plan is to go into a nursing home, well then, make arrangements.”

6. Act.

Even families who have planned for death can struggle to know what to do when active dying begins. Some family members freeze or withdraw, afraid that as death approaches they’ll do the wrong thing. 

Workers advise just the opposite:

• Don’t wait for a final sign. Deaths in pop culture often are dramatic — marked by violence, dying confessions, or revealed secrets — and families sometimes miss a chance to offer a dying person acts of kindness while waiting for a sign that never comes. 
• Small things matter. There is nothing particularly sacred or dramatic about pulling up the covers, or turning a fan, or feeding ice chips. But these acts are the remaining opportunities to express regard and love. 
• Keep up the rituals. Daily rituals sustain the dying and offer a way of being with the dying person, of communicating compassion, understanding, attention and respect. 
• “Don’t be afraid to touch them,” said one worker. “You can hold them, you can kiss them, you can hug them.” 

7. Talk. 

Death is not successfully avoided by silence. End-of-life workers say the dying know they are dying and benefit from frank conversations with loved ones. But friends and family often avoid the subject and focus instead on a quest for more time, hope of cures, or minutiae. In the process, they squander precious opportunities to say good-bye, to offer apologies and forgiveness when needed, and to communicate their deepest feelings. 

Their advice is simple: Stay attuned to the process and speak to the dying. Hearing seems to continue long after other senses shut down, so even after the opportunity to do something has passed, the opportunity to say something continues. Talk to the dying, rather than about them. One worker said, “Keep talking to them, they can hear you. Hearing seems to be the last thing to go. Keep talking.”

8. Be grateful.

Of the 50 people I interviewed who have ushered someone else toward death, the most common refrain was gratitude for the opportunity, because it helped them overcome their own fears of death, live more fully, and do meaningful work. Many said they felt more alive than before they began such work — more communicative, more secure, and more willing to touch others, speak frankly, and make plans for their own lives. They found their days more rewarding and their routine engagement with death transformative, precisely because it was difficult and rare. The continuing presence of death also reminded them of the preciousness of life. Workers expressed confidence, even bravado, in the face of death. “When my time comes, I’ll just stock my freezer with Haagen-Dazs, put in a margarita machine, and enjoy the end,” one says. 

When workers encourage us to embrace the dying process, they do so in part as a result of their own transformative engagement with death, and are sharing an approach to death that they think preferable to denial and avoidance. Their advice to pursue an intentional, sustained process of ushering another person into death reflects the rewards that they’ve experienced as a result of their work.