PDF Summary:Being Mortal, by Atul Gawande

In Being Mortal, surgeon Atul Gawande considers our experience of aging and dying in the 21st century. In his view, the modern approach to these stages of life undermines our ability to live well up to the end—to do better, we need to accept death as a natural part of the human experience and prioritize the well-being of the dying.

Critics praised Being Mortal and considered it one of the best books of 2014. It’s since been adapted into a TV documentary and a feature film.

We’ve divided our guide into two main sections to explore Gawande’s theme. The first section examines some of the ways we approach aging and death in our modern era, and the second explores Gawande’s ideas about how we might improve our experience of these profoundly important aspects of life.

In our commentary, we’ve contextualized Gawande’s ideas by citing relevant statistics about end-of-life care in the modern healthcare system and by exploring psychological insights on how we experience our mortality.

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There have been alternative models of care that try to do a better job, but they’re not commonly practiced, writes Gawande. For example, the original assisted living model of care was designed in the 1980s to promote personal freedom. Residents could live in a comfortable space and direct their own lives—they could choose when they wanted to sleep, what they wanted to eat, and so on. Early studies of these facilities found that residents had improved cognitive and physical health, higher levels of satisfaction, and less depression than those who stayed in nursing homes.

(Shortform note: The founder of the assisted living model of care describes three distinctive features of the model: having a home-like environment, providing daily needs and health-related services, and emphasizing the personal autonomy of the residents over their own time, space, possessions, activities, and medical care. Home-like environments have become increasingly common in nursing homes, and providing services has always been a core component of the nursing home model. Therefore, the most distinctive feature of assisted living is personal autonomy. Recent studies show that care facility residents—whether in assisted living facilities or not—are healthier and happier when they feel they have autonomy.)

Despite its success, this alternative assisted living model of care is rarely practiced today, though many institutions use the name. According to Keren Brown Wilson (the founder of the model), its failure exposes the ongoing difficulties we face in supporting the deeper needs of the elderly: Institutional priorities—regulations, profits, performance goals, and so on—aren’t aligned with the priorities of the residents.

For example, metrics like blood pressure stats and injury reports often become the gauge of an institution's success. Since independent people (the elderly included) often minimize their health and safety in favor of doing things they like, such metrics discourage organizations from giving residents autonomy. For instance, an elderly person may not be allowed to go on a nature walk due to the risk of falling. Despite their good intentions, institutions often sacrifice personal freedom and a sense of meaning in support of health, safety, and the bottom line.

Evaluating Assisted Living Facilities

It’s easy to find organizations called “assisted living” facilities; however—as Gawande and Keren Brown Wilson indicate—there’s wide agreement among experts that these facilities don’t always provide care that lives up to the original assisted living model. How can you determine if a particular assisted living institution will meet the needs and priorities of your loved one?

Experts suggest that you evaluate whether facilities prioritize the needs of residents by looking at a few key indicators, such as residents’ quality of life, family satisfaction, and staff attentiveness and job satisfaction. Residents should have the ability to practice their religion, enjoy the food, exercise, and feel connected to others. The families of residents should be satisfied with the care their loved ones receive. Staff should be responsive and attentive and not report major concerns with their working environment and culture.

Researching these and other indicators can help you determine if a particular assisted living community is right for you or your loved one.

We Don’t Prepare for the End of Life

One final feature of aging and dying in our modern era is our reluctance to prepare for death. Gawande observes that we rarely contemplate the final days of life—if we’re confronted with an unexpected terminal diagnosis, doctors, patients, and family members often default to a frenetic search for a cure. In this way, we become consumed by anxiety and denial, and we sacrifice a sense of meaning and closure as death approaches.

(Shortform note: One indicator of our reluctance to prepare for death is the fact that, as of 2017, only a third of US adults completed any form of advance directive (for example, a living will or health care power of attorney). Furthermore, barely more than one in five Americans has ever spoken to a family member about their funeral wishes. These statistics indicate that—at least in the US—it’s uncommon to contemplate and prepare for death, as Gawande suggests.)

Gawande asserts that because we lived with ever-present reminders of death for most of human history, we were once accustomed to facing it. Life was full of hazards—incurable diseases, rampant infections, dangerous tasks, and so on. On top of that, we were more accustomed to seeing people, such as elderly family members, die. Expecting your time to come at any moment, it was common to prepare in advance. Getting ill or contracting an infection would have made you realize your time was limited, and you would have accepted that reality: Survival was an unrealistic expectation.

Now, however, advances in medical technology have prolonged the process of dying, writes Gawande. Patients can be kept alive long after their minds are inactive and their bodies immobile. With endless treatment options available, we've neglected to accept our mortality—as he sees it, we must relearn how to die.

(Shortform note: Attitudes about death aren’t only conditioned by the kinds of technological and historical changes Gawande discusses here. Experts argue that cultural influences have a far greater impact on the way we think about—and prepare for—death. For example, while it’s common to fear your own death, some cultures (considered death-affirming) see death merely as a transition to another phase of life. This is true of many Eastern traditions, including Hinduism. In these death-affirming cultures, people accept death as a natural part of life. This contrasts with death-denying cultures, which are more common in the Western world. These cultures often have an attitude of fighting or defeating death.)

How We Can Approach Aging and Dying Better

Gawande believes that our current approach to aging and dying harms our well-being. Throughout Being Mortal, he suggests some specific ways we can do better. In this section, we’ll consider four of those ideas.

We Need to Reorient Our Priorities From the Future to the Present

One way we can improve our experience of aging and dying is by reorienting our end-of-life care toward present-oriented priorities.

Referring to the work of psychologist Laura Carstensen, Gawande observes that our priorities change depending on how much time we believe we have left to live. People close to death have a present-oriented outlook: They value close relationships, treasured memories, and simple pleasures. However, the people caring for them tend to have a future-oriented outlook. They value ambitious life goals, personal independence, meeting new people, and having new experiences—and they often assume their patients share their outlook.

(Shortform note: While Gawande portrays this present-oriented outlook as generally positive for the aged and terminally ill, it may also have some downsides. According to Carstensen, one downside is that it makes the elderly more susceptible to scams and being taken advantage of. She reasons that, by focusing on positive aspects of the present, the elderly are less likely to think critically and notice potential negatives.)

Our modern approach to dying is dominated by this future-oriented perspective and so neglects the core values of the dying, argues Gawande. A feeling of togetherness, for instance, is central to a present-oriented perspective: The dying are rarely interested in making new friends and acquaintances because they want to feel connected with their deepest, oldest relationships. Hospitals and nursing homes, however, are characterized by a feeling of isolation among strangers and new acquaintances.

(Shortform note: Some feelings of isolation don't depend entirely on the nature of the institutional setting, especially for the dying, and can, in fact, be normal for those approaching death. Experts observe that the dying often feel existential loneliness (EL)—a kind of utter emptiness that’s affected neither by the presence of strangers nor loved ones. They note further that EL isn’t alleviated by addressing the feelings it causes. For the dying, it’s normal to feel that death is a uniquely individual experience that can’t be shared.)

Likewise, doctors who overlook the simple daily needs of their elderly patients fail to recognize that, for the dying, living well in the present is more important than hoping for a better future. Often, Gawande finds that doctors work to extend the lives of their patients, inadvertently depriving those lives of meaning and purpose in the present.

(Shortform note: A recent healthcare initiative in the US proposes a framework for realigning doctors' priorities with those of their elderly patients. This framework emphasizes aligning all care to the specific goals, preferences, and priorities of elderly patients, even if it means foregoing some treatments. By keeping this in mind, doctors can better serve their patients as Gawande argues they should.)

We Need to Talk About Aging and Dying

According to Gawande, another way we can improve our experience of our mortality is by talking about aging and dying more openly. We tend to avoid these conversations, but that leaves us ill-prepared to deal with the challenges aging and dying present.

These challenges elicit powerful emotions we must acknowledge to reduce some of the fear and uncertainty that surrounds death. For instance, the dying often fear the process of decline—the pain, memory loss, or the suffering their loved ones endure. These fears are often mixed with powerful hopes, as well—hope for a cure, for comfort, for the ability to stay lucid.

(Shortform note: Gawande’s advice here is echoed by the American Cancer Society (ACS), which encourages those facing death to clearly identify what they’re feeling. Common emotions include fear, anger, guilt and regret, grief, anxiety and depression, and loneliness. In addition, the ACS notes that those facing death long to find meaning and purpose. They encourage the dying to reflect and share personal wisdom and insights with family and friends. They suggest such practices can help dying individuals manage and process their turbulent emotions.)

According to Gawande, such concerns should be acknowledged and discussed openly to navigate the final days of life. These are difficult conversations, and many doctors mishandle them. For instance, some dominate the conversation, focusing on how to fix the problem and plan a course of treatment. Others are more reserved, preferring to let the patient or family make all the decisions with little or no guidance.

(Shortform note: It’s not only doctors who struggle to have conversations about death. For instance, for patients who received a terminal diagnosis, it can be overwhelming to discuss fears and concerns with doctors. Experts advise having a friend or family member join you for follow-up appointments to help navigate the conversations. They also recommend writing about your fears and concerns or seeking local or online support groups to build your confidence discussing them.)

However, a few well-practiced physicians use an approach Gawande believes is best: the interpretive approach. With this approach, doctors help patients speak about their fears and hopes and figure out exactly what they want for their end-of-life care. They give them information about their prognosis, treatment options, and potential risks and rewards, but they also help them understand the implications of that information as it relates to the patient’s deepest concerns.

Often, by determining what a patient hopes to be able to do, whether it’s making it to a child’s wedding or simply enjoying food, doctors can advise patients about the best strategy to help them achieve their goals. Similarly, by understanding what a patient fears most—the indignity of being unable to control bodily functions, for instance—doctors can help steer patients toward the best options. In this way, by working with the patient, doctors can tailor an approach to their end-of-life care.

(Shortform note: The interpretive approach allows doctors to get to know their patients more intimately to provide better care, but it takes more than simply talking to ensure these conversations are supportive and productive. For example, the American Academy of Family Physicians advises doctors to reserve adequate time for the conversation, turn off their electronic devices, and listen carefully to the patient’s response. As Gawande suggests, these conversations are important experiences and need to be approached with great care.)

Family members can model their own conversations about death on this approach. The most important components are acknowledging death, being clear about hopes and fears, and deciding what to prioritize as time runs short, writes Gawande.

(Shortform note: In addition to this advice, hospice care professionals encourage family members and friends to discuss four particular things with terminal loved ones. First, ask your loved one if there’s anything special they’d like to do or accomplish. Next, acknowledge conflicts and seek to resolve them. Third, reflect on your loved one’s life together and find meaning in it. Finally, help your loved one express what’s truly important to them. In addition to this, hospice professionals advise you to respect the terminal individual’s need for alone time and personal space.)

We Need to Help the Dying Retain Their Autonomy

A third way we can improve our approach to mortality has to do with autonomy. Gawande believes that helping the dying preserve their autonomy is one of the most important aspects of end-of-life care. He distinguishes between negative and positive autonomy.

Negative autonomy is the absence of constraints. This is the autonomy we look for when we simply want our body to be fully functional and healthy. To Gawande, this autonomy is no longer critical for the aging and terminally ill—on the contrary, as our bodies weaken, it’s vital to acknowledge our limitations and dependence.

(Shortform note: Studies show that those suffering from severe physical limitations—those who’ve lost their negative autonomy—feel happiest when they have strong social support and reduced pain. For these reasons, caregivers should provide the dying with comprehensive social support and pain management to help them cope with the loss of physical function.)

Positive autonomy, by contrast, is the freedom to direct your life. According to Gawande, this freedom is crucial for those facing death, as it allows them to live according to their values and retain meaning in spite of severe limitations.

(Shortform note: Gawande’s distinction between positive and negative autonomy isn’t original to him—it has a long history going back to the 18th-century philosopher Immanuel Kant and many thinkers throughout the 20th century used it. For instance, psychoanalyst Erich Fromm argued that negative autonomy on its own inevitably leads to feelings of isolation and meaninglessness because you never feel dependent on others. He believed that positive autonomy, by contrast, facilitates a sense of meaning and connectedness to others: Your desire to direct your own life heightens the value of relationships and actions.)

One way to help the dying retain this kind of autonomy is to establish it as the priority in end-of-life care. Gawande argues that by keeping this in mind, you’re better able to judge which actions to take. Caretakers should work with the dying to help them maintain their ability to direct their lives toward the things that give them purpose and meaning.

This can manifest in different ways. Some elderly people may choose to care for a pet, for instance. Others may simply enjoy listening to music or being outside. Elderly individuals will choose to spend their time in different ways if they can make that choice.

In the case of the terminally ill, facilitating their autonomy may involve letting them choose to forgo treatments that could extend their lives but that may cause pain or isolation. Or it may involve ensuring they have medication to manage pain. The goal is to support their ability to choose the way they spend their final days.

(Shortform note: Contrary to Gawande, some experts argue that a dying patient’s sense of intrinsic dignity is more critical than their sense of autonomy. While they acknowledge that the two concepts are closely linked, they believe the distinction is vital. They observe that, in a palliative care context, patients are often unable to exercise self-determination because of physical and mental deterioration. For this reason, it’s important to ensure that a patient can retain their sense of intrinsic dignity even when they can’t exercise autonomy.)

We Need to Be Judicious in Our End-of-Life Healthcare

According to Gawande, a final way we can improve our approach to dying is to be judicious in our end-of-life healthcare. This involves being decisive about what we want and resisting the urge to address every ailment the dying face.

Gawande insists we should decide exactly what we want for our last days. Do we want to undergo every possible life-saving treatment? Or are we willing to forgo treatment so we can stay clearheaded and have more time with our loved ones? Should doctors try to resuscitate us? Or will we let our bodies naturally give out? We must consider these difficult questions if we hope to give ourselves and our loved ones peace and closure in our final moments.

(Shortform note: Gawande doesn’t specify when we should plan our end-of-life care, just that we should plan it. We have to be in a sound state of mind to plan it, so we should do it while we’re still capable of expressing our wishes and making complicated decisions. This planning typically involves several components, such as creating a living will (also known as an advanced directive), securing life insurance, determining what lifesaving measures you’re willing to receive (such as CPR or intravenous fluids), where you’d like to receive your end-of-life care, how you want your body to be handled after death, and so on. The process can be stressful and demanding, so make the decisions before they become urgent.)

If we don't decide how we want to live our final days, we'll likely get caught up in the inertia of our modern, medicalized approach to dying, which will undermine our ability to find peace. The dying are often barraged with endless treatments and relegated to the isolation of a hospital ward, unable to experience closure as they should. Gawande argues that the dying should have the chance to wrap up their affairs, share their deepest thoughts, encourage their loved ones, and establish their legacies. Being deprived of these opportunities is devastating for those facing death, but medical institutions often do just that.

(Shortform note: Some experts disagree with Gawande’s perspective, arguing that hospitals provide a level of care and expertise that’s critical for dying patients and their loved ones. Beyond providing around-the-clock access to advanced medical technology, hospitals can provide social support and a better avenue to closure for the bereaved. When a loved one dies at home, painful memories become associated with that place, but when a loved one dies in a hospital, the memory of the death is separate from the home. Despite such advantages, these experts argue that hospitals must work to maintain privacy for patients, preserve their dignity, and respect their wishes about end-of-life care.)

Hospice as a Model for Judicious End-of-Life Care

According to Gawande, hospice contrasts with this approach and is a model of judicious end-of-life healthcare. It’s designed to support the well-being of the dying and their loved ones by helping them determine and focus on their urgent end-of-life priorities. It reduces or eliminates invasive treatments in favor of comfort and peace. Hospice caretakers reduce distractions for their patients so they can find closure: They treat the process of dying as a natural experience patients can meet with clarity and calm.

Gawande writes that this form of care has been shown to extend the lives of patients when compared with traditional interventionist medical care, but it’s not practiced as widely as it should be. More should be done, he suggests, to make hospice care commonplace.

(Shortform note: Despite the benefits of hospice care, the World Health Organization recently estimated that only 10% of people in the world who need such care receive it. Most of those who don’t receive this type of care live in low- and middle-income countries. In the US, the Medicare hospice benefit (enacted in 1983) has made access to hospice generally affordable, yet the care is used by only half of the eligible population. Hospice professionals note that many are simply unaware of how to access the care they need. They suggest that you should discuss hospice options with your healthcare provider whether you or a loved one is presently in need of the services or not.)