Month: December 2022

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Pulling the plug

— What does Jewish law say about ‘passive euthanasia?’

In such circumstances, the ventilator becomes a ‘bridge to nowhere’

Jewish bioethicists significantly disagree regarding “passive euthanasia,” which can constitute either the withholding or withdrawing of treatment from the terminally ill.

By SHLOMO M. BRODY

Tragically, many terminally ill patients can be kept alive yet suffer greatly from their sickness or alternatively remain in a comatose or vegetative state for a long time. One of the critical pieces of technology that allows them to remain alive is a mechanical ventilator (or “breathing machine”) that provides artificial respiration. This invasive treatment keeps a patient oxygenated and the lung structures intact.

In ideal situations, the ventilator is meant to serve as a “bridge” to help patients get through a difficult period until they can be removed from this artificial support. However, the ventilator can frequently maintain respiration for a long time even when there is no hope for recovery. In such circumstances, the ventilator becomes a “bridge to nowhere,” raising the question of whether the artificial respiration can be stopped to allow nature to take its course.

In general, Jewish law supports employing palliative measures to reduce suffering, such as those utilized at hospices. This even includes gradually increasing morphine injections as long as one intends to reduce pain and not to hasten a patient’s death. At the same time, Jewish law prohibits suicide or so-called “mercy killings.” For this reason, Israel and many other countries do not permit active euthanasia or even the slightly more moderate model of physician-assisted suicide whereby healthcare professionals provide the necessary tools for the patient to take his own life.

Jewish law on withdrawing or witholding treatment from the terminally ill

However, Jewish bioethicists significantly disagree regarding “passive euthanasia,” which can constitute either the withholding or withdrawing of treatment from the terminally ill. In the 16th century, Rabbi Moshe Isserles codified three major principles regarding the treatment of patients approaching death (goses): (1) One should not cause them to die more slowly; (2) One may not do any action that hastens the death; (3) One may remove something that is merely hindering the soul’s departure. Unfortunately, these principles remain subject to different interpretations. The examples given in the code, including placing salt on the tongue and synagogue keys under the pillow, remain difficult to correspond with modern technologies, to say the least.

The success of medicine has cast a shadow. (credit: UNSPLASH)
The success of medicine has cast a shadow.

Regarding the withholding of medical treatments, Rabbi Eliezer Waldenburg and others contended that the value of every moment of life remains infinite and absolute. One must therefore administer, even under the most miserable of circumstances, all life-extending interventions, including a ventilator, even if this would be against the patient’s will. The mainstream approach today follows the opinions of rabbis Shlomo Z. Auerbach and Moshe Feinstein, who asserted that one may withhold life-prolonging treatment from terminally ill patients experiencing intense anguish.

Following this line of thought, one may fill out a halachic living will to enable, in cases of terminal illness and suffering, the withholding of life-prolonging treatments, such as resuscitation (DNR) or incubation (DNI). Following the same rationale, one may also choose to withhold the next round of intermittent or cyclical treatments, such as dialysis or chemotherapy, which is deemed as an act of omission. Some decisors assert that basic substances for bodily maintenance, such as oxygen, nutrition, and hydration, can never be withheld. Others, like rabbis Zalman Nechemia Goldberg, Mordechai Willig and Hershel Schachter, deem these items as medical treatments that the patient or their proxies may choose to withhold. The primary goal of care at this stage should be maintaining the comfort of the patient.

When doctors administer a continuous life-prolonging mechanism, like a ventilator, it becomes more difficult to withdraw this treatment. Former Tel Aviv Sephardi chief rabbi Chaim David Halevi classified an artificial respirator as a mere impediment to death that doctors should disable to prevent the inappropriate prolonging of the death process. The more mainstream approach, advocated by rabbis Auerbach and Feinstein, contends that one cannot remove an artificial respirator, as this will directly hasten the patient’s death, even if intubation is no longer deemed medically advisable. One would not, however, need to reconnect the machine if its functioning had to be interrupted anyway to service it or suction the patient.

To prevent prolonging the deaths of intubated patients, two possible solutions may become advisable. Firstly, many decisors will allow extubating if the patient will not die immediately. Some believe that the person would still need to be able to survive for two days. Many others, however, speak of “a number of hours,” or even less, for the patient to remain stable.

Another possible solution was endorsed by rabbis Auerbach, Willig and Shmuel Wosner, who allow the oxygen rate of the ventilator to be carefully lowered to the level found in the normal air which we breathe, provided that the patient can still breathe on his own. Unfortunately, these two solutions aren’t always logistically possible, and as with many issues in Jewish law, not all decisors agree with them.

In 2006, a 59-member committee representing the full spectrum of Israeli ideological worldviews, led by the esteemed Prof. Avraham Steinberg, attempted to form a halachically defensible national policy regarding ventilators and end-of-life care. The Steinberg committee proposed a compromise position that mandated operating all respirators on a timer, thereby allowing it to shut off automatically, should the hospital committee deem this act of omission appropriate given the patient’s condition.

Unfortunately, the Israeli health system has not been able to implement this proposal. In its absence, many families are left without an appropriate solution, while some healthcare providers may take actions that are more questionable under Halacha (or Israeli law). One hopes that the new government will address this issue and provide a suitable solution for this difficult situation.

Complete Article ↪HERE↩!

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America’s life expectancy is dropping because younger people are dying

A tombstone in the Danville National Cemetery.

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On Thursday, the Centers for Disease Control and Prevention made a grim announcement. For the second year in a row, American life expectancy declined. In 2019, there were 715 deaths for every 100,000 Americans and life expectancy at birth hit 78.8 years. In 2021, there were nearly 880 deaths per 100,000 people and life expectancy at birth dropped to 76.4 years.

The ongoing death toll from the coronavirus pandemic played a central role, as did deaths from drug overdoses, particularly opioids. But the scale of the drop in life expectancy is also a function of who is dying. More people are dying at a younger age, which drives expectancy lower than deaths among the elderly.

I spoke with Stanford University’s Shripad Tuljapurkar in 2021 about life expectancy. He made precisely this point about the effects of younger deaths.

“If you kill somebody off at age 50, the effect on the life expectancy is much greater than if you kill somebody off at age 75, to put it bluntly,” he said. “Consequently, we do see drops in life expectancy simply because we are losing younger people at a rate that we wouldn’t have predicted.”

In the last two years, younger people have in fact seen a larger increase in deaths. Using CDC data (including provisional figures for 2021), we see that the rate of deaths among Americans under the age of 25 rose 2.5 percent between the average value in 2018 and 2019 and the average for 2020 and 2021. For those 65 and over, deaths increased nearly 20 percent, heavily due to covid-19. For those aged 25 to 64, though, the increase was even higher, just shy of 24 percent.

You can see that below. The number of deaths in 2020 and 2021 rose significantly from teens upward as the pandemic killed more than a million people. But notice the data on covid-19 deaths in 2020 versus 2021: the death toll skewed younger. We can attribute this in part to resistance to vaccination against the virus, which was more common among those under the age of 65 — given how deadly the virus was for those over the age of 65 in 2020.

On a state-by-state basis, we can see how that looks. Below, the change in the number of deaths is shown for each of 11 age groups. The percentage of increase (darker purple) is consistently larger at the middle of the graph — not children, not elderly — than at the edges.

We can also see politics at play. A disproportionate number of covid-19 deaths in 2021 occurred in states that supported former president Donald Trump in 2020, places where the delta variant surged during the summer and vaccination rates were lower

According to CDC data, there were about 378,000 more deaths in 2020 and 2021 than in 2018 and 2019 among those aged 65 and over. There were also about 137,000 more deaths among those aged 25 to 64 — a larger increase relative to the 2018-2019 baseline.

That increase is one reason that the country’s life expectancy fell. Americans were dying more — and younger.

Complete Article ↪HERE↩!

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Most People Feel This First Before They “Die of Old Age,”

— Including Losing Senses

by Heather Newgen

Death is something we will all face. Nobody knows when our time is up, but it’s estimated that 56 million people die each year.  The average lifespan for men in the United States is 74.5 and for women it’s 80.2,  according to World Data, and before we pass chances are we’ll experience the death of a loved one, friend or colleague.

Even if you have a warning that your loved one is dying, it’s not something you can really prepare for. Grief is a terrible thing to go through, but knowing the final stages of life can be helpful. “There are stages to death, and when they are recognized and accepted, it opens the door for peace and grace,” Niki Yarnot, MSW, LASW, a career and life coach who previously worked for 10 years as both an inpatient and outpatient hospice social worker, tells us.

Each person’s journey is unique and different. Some people will have a steady decline, while others will transition quickly. That said, there are often signs that the end is near. “Healthcare workers approaching the conversation around the end of life is SO important.  Michelle Saari MSc, RD emphasizes. “Nutrition is one of the key indicators we see that the end of life may be coming.  We see a lot of unintentional weight loss, decreased appetite, loss of independence in eating their meals, difficulty swallowing.  As Clinical Dietitians, we tend to see the end coming six months out.  It is so important that we are trained to talk about the end of life early, so that loved ones can not only prepare themselves, but also so they aren’t surprised when the time is coming.

Tomi Mitchell, a Board-Certified Family Physician with Holistic Wellness Strategies tells us, “Death by old age is an intriguing concept, but it is rarely as simple as people assume it to be. Contrary to popular belief, death due to old age is not actually caused by the body physically wearing out or breaking down. Instead, it is usually a combination of diseases and other illnesses that accumulate over time resulting in organ failure and ultimately death. As people get older, their bodies become weaker which makes them more susceptible to physical ailments like heart disease and stroke; these are two of the most common causes of death among those of advanced age. Other risks that older individuals face include cancer, dementia, diabetes, and respiratory issues – all of which can contribute to an older person’s demise within a matter of years or even months.  Various lifestyle choices such as poor diet, lack of exercise, smoking, excessive drinking, drug abuse, and stress can also have wide-reaching implications when combined with age-related factors. In short, death due to old age is not necessarily caused by one specific factor – instead, it is often the result of multiple issues connected with aging or unhealthy living.”

Erin Blakely, LNHA and MSW adds, “Technically, no one dies of old age. As we get older our bodies naturally start to decline in physical capacity as well as energy levels. This is due to the aging process, which is an incredibly complex set of biological changes that occur slowly over time. As you age, your cells start to break down and become less efficient, leading to weakened muscles, slower reaction times and overall decreased physical or mental performance. Your immune system also takes a hit as you get older. Older people tend to be more susceptible to illnesses such as colds and flu due to their weakened immune systems. Your body’s ability to fight off infection decreases over time as well, which can lead to other health complications such as cancer or heart disease.

When it comes to death from old age, there are several potential causes. The most common cause is cardiovascular disease, which refers to any condition that affects the heart or blood vessels (e.g., high blood pressure or coronary artery disease). Other common causes include stroke and various forms of cancer. Additionally, some people may die from complications related to chronic illnesses such as diabetes or dementia. Another factor contributing towards death from old age is simply the gradual deterioration of bodily systems over time.  This can be accelerated by lifestyle factors such as poor diet or lack of exercise.  But ultimately even healthy individuals cannot escape the effects of aging on the body forever, your physical capabilities will fail you and cause your eventual demise.”

Nancy Mitchell, a Registered Nurse with Assisted Living Center states, “Dying of old age isn’t a mysterious phenomenon like some people make it sound. Death always comes with a cause, whether it was detected earlier, treated without success, or neglected over the years. There’s always some condition or illness behind death, even when people die in their sleep. The most common cause of “death in old age” are heart attacks, cancers, and strokes. In some cases, it’s an infection that the aging body struggles to fend off unsuccessfully.  That’s the point of conducting autopsies—to discover the true reason behind a passing. No one ever writes “died in peace” on a death certificate. There must be an underlying medical cause.”

Dr. Mitchell says, “The end of life is something that we all must face someday, and while there are no hard and fast rules as to how it should unfold, some believe there may be stages in the process. Depending on the culture or Life Story approach, these stages may include letting go physically and emotionally, preparing practical matters such as finances, addressing unfinished business such as relationships, reaching a deeper level of consciousness, accepting reality and death, preparing for a spiritual journey, or actively planning a “good” death. These concepts can often help those dealing with loss to make sense of their experiences as well as to honor their loved ones who have departed. Though no two stories will follow the same path, being mindful of life’s unique journeys can help us appreciate our connections beyond the physical realm.”

Yarnot explains, “There are stages to death, and when they are recognized and accepted, it opens the door for peace and grace. Someone may be “dying” over the course of days, weeks, even months. As the final days enter though, identifiable changes begin. People often experience visioning. Often they appear to be speaking to loved ones who have died before them. They may be standing next to the bed, or sitting in a nearby chair – but the dying individual sees and hears them clearly. It is important to note, this is not a hallucination. Hallucinations cause distress and fear. Visioning is generally peaceful and calming.. You might also notice the dying individual looking up and to the right corner of the room – again, a sign of visioning.”

According to Dr. Mitchell, “When someone enters the final stage of life, the first sense to begin deteriorating is usually smell. As the loss of this sense progresses, people may find themselves struggling to enjoy the foods and beverages they used to love. They can also lose the ability to detect unpleasant odors in their environment. As a result, it’s essential for caregivers of those in this stage to keep the living spaces clean of any unwanted or bad smells. Also, introducing pleasant fragrances like scented candles, flowers or aromatic oils can help bring comfort and a sense of familiarity to those approaching death. Ultimately, keeping their sense of smell intact is one way that we can honor and show our admiration for those in their last moments on earth.”

Blakely says, “For those with death imminent, you can usually recognize the signs of the physical changes occurring with their body.  For example, their breathing may become more labored and shallow. This is especially true if they are experiencing congestive heart failure or another illness that affects their ability to breathe. They may even take short pauses in between breaths—a sign that their body is slowing down and preparing for death. Another physical sign that someone is nearing death is a change in their skin color. As time passes, their skin color may turn pale or ashen gray due to reduced circulation from lack of movement or oxygen deprivation from difficulty breathing. In some cases, the skin may also have a yellowish hue due to jaundice, which is often caused by liver malfunction. A decrease in urine output can also be an indication that someone’s life is coming to an end. The kidneys are responsible for producing urine, but when the body begins shutting down, they will produce less and less until eventually they stop altogether. The color usually changes as well to darker colored urine.”

happy family on couch

Jennifer Prescott, RN, MSN, CDP, founder of Blue Water Homecare and Hospice in Austin, TX says, “An end of life rally, or “terminal lucidity” may occur with your loved one. We see individuals wake up, ask for a Big Mac and fries, attend an event or have a normal visit with a friend or family member. This sudden burst of energy can allow family members one last opportunity to show love, make peace and apologize if necessary.”

Dr. Mitchell states, “An end-of-life rally involves an important period of time that a dying person experiences—where they make a final effort to remain mentally and physically present. A rally may include physical comfort measures to make the individual more comfortable, as well as spiritual guidance or a chance to make peace with their past and/or future plans. A patient may also get to spend time with friends and family, discuss funeral arrangements, or even write letters or start projects that can be completed after their death. During this difficult time, it is important for loved ones to provide psychological and emotional support so the person can transition peacefully.”

Portrait of sad mature woman sitting on couch at home and looking away with worry and anxiety.

Dr. Mitchell says, “The final stage of dying is a time that marks the end of life. Signs that someone is about to die will depend on what illness they have but typically include difficulty breathing, changes in mental alertness, and physical weakness. In the days leading up to death, a person may become unresponsive and show signs of exhaustion. These feelings can be both disorienting and painful for family and loved ones who witness this process but being with someone during their dying moments can provide comfort and solace in addition to bringing closure to a life’s journey.”

Saari explains, “The final stage at end of life is a loss of consciousness and the body systems shutting down. We see the non-essential body systems start to slow down.  Food and fluid intake is quite small, increased sleep and fatigue, less interactions.  It’s a peaceful time and the goal is to make them as comfortable, pain free, and peaceful as possible.  As a health care practitioner, our goal is to make them have the most peaceful dying process possible and support their loved ones in the transition.”

Prescott shares, “Physically, the body begins its final process which ends when the body is unable to sustain life.  At this time the body is unable to maintain homeostasis and we see physical changes that are best managed with comfort enhancing measures through hospice care.  The physical changes experienced during the dying process include temperature changes (hot or cold), skin color changes called mottling that indicate the blood is failing to circulate appropriately, increased sleeping, changes in mental status, decreased oral intake, incontinence, decreased urine output and breathing pattern changes and congestion.  These physical changes are the body’s sign that it is slowing down and cannot maintain proper heart and lung function to maintain life.   It is important to note that these are all normal changes at end of life and some symptoms such as shortness of breath, cough and congestion can be helped with medications prescribed by the hospice physician or attending physician.

The second dynamic occurs on the emotional, spiritual, and mental side.  During this time a person begins to withdraw from their surroundings (including relationships) and conversations (and will eventually lose the ability to communicate).  The process is usually a slow decline in a person’s ability to speak, and we see increased sleeping.  Each person follows their own path; however, some want to have conversations to resolve any unfinished business in one’s life or a person will report hallucinations such as seeing people that have passed away previously in their room.  Some may experience restlessness. Many people need to hear that it is ok to “let go” or “die” in order to feel at peace.  Others may crave forgiveness, appreciation, and love to feel able to accept this time of transition.  It is helpful to reassure your loved one during these times and contact your hospice nurse to help if they are uncomfortable, or restless.  Sometimes restlessness is a lack of oxygen and there are oral medications such as Morphine, that can help in small doses to decrease a person’s sense of breathlessness and allow for better oxygenation.” 

Empathic young lady embracing soothing crying depressed elder mommy, sitting together at home

Saari shares, “I always speak with my patient’s loved ones and suggest that they simply focus on savoring their moments with their loved ones. Allow the healthcare workers to provide them with their physical needs, while the family simply focuses on every moment they can hold their hand. Many feel as though they aren’t doing enough, so they can provide mouth care, listen to their favorite music, talk to them about wonderful memories. Focus on treasuring those final moments and making peace with a final farewell.”

Dr. Mitchell says, “Those who are in the presence of a loved one who is close to death can find it emotionally challenging, so offering necessary and meaningful support is important. It involves being present, being aware of all the changes happening both physically and emotionally, allowing time for emotions to be expressed, and providing space and an opportunity to have meaningful conversations that cover topics from reminiscing about the past to discussing matters such as any unresolved issues or last wishes.

Furthermore, sitting and talking with those affected can provide comfort at a time when nothing else seems relevant. Ultimately, loving support can make a difference in their lives by enabling them to maintain a sense of self-respect and dignity as they enter into their final stages of life. In addition to providing emotional and physical support, it is important to consider practical matters such as making sure that their end-of-life wishes are respected. This can involve discussing topics such as the type of care they would prefer in their last stages of life, funeral arrangements, and any other decisions related to the end of life. Being present.”

Complete Article ↪HERE↩!

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Counselors Are Urged To Take the Death of Their Clients’ Pets More Seriously

By Margherita Cole and Pinar Noorata

For many people, their pets are their world. The love they feel for their dog, cat, rabbit, lizard—any domesticated living creature they care for—is boundless. That’s precisely why losing a pet is like losing a member of the family. However, this type of bereavement is rarely taken as seriously in professional and social settings. Though many people can sympathize with someone grieving the loss of another human, society generally lacks the same level of empathy for someone whose pet has passed away. In an effort to dissolve the stigma around a person grieving the death of a pet, a new review strongly encourages counselors to take different approaches with clients who are mourning their non-human companion.

The review—titled Overcoming the social stigma of losing a pet: Considerations for counseling professionals and co-authored by Dr. Michelle Kay Crossley (an assistant professor at Rhode Island College) and Colleen Rolland (president and pet loss grief specialist for Association for Pet Loss and Bereavement)—explores the importance of recognizing grief in patients and offering them a safe space to deal with it. The report explains: “While empathy may come more naturally when discussing human loss, there are other types of loss that are not acknowledged or given a similar amount of attention by society. Grief due to these socially unendorsed losses is referred to as disenfranchised grief and can include death by suicide, a lost pregnancy/miscarriage, and death from AIDS, in addition to the death of a pet.”

Dr. Crossley and Rolland explain how harmful the disregard of a pet owner’s grief can be. As the paper states, “When relationships are not valued by society, individuals are more likely to experience disenfranchised grief after a loss that cannot be resolved and may become complicated grief.” In an effort to guide mental health consultants, the co-authors write: “It is important for counselors to recognize their own biases regarding the types of losses that are worth an empathetic response as individuals are better able to heal from a loss through social support and recognition.” They add, “A counselor can cause more pain to the client by not understanding or honoring the depth of the bond shared between the client and the pet. The distress that one can experience secondary to the loss of a companion animal can be intense, and it is critical to serving these clients in the same manner that we would have had they been grieving the loss of a human.”

The article also highlights the impact the COVID-19 pandemic had on human-animal relationships. During this time, there was an increase in the adoption rates of cats and dogs. Additionally, since many individuals transitioned to working from home, people also relied more on their animal companions for comfort. As a result, many more people have bonded with their pets in the last few years. But, even in years prior to this uptick in animal adoption, the American Veterinary Medical Association recorded in 2018 that “57% of households owned a pet with 66% owning more than one companion animal. Of the individuals surveyed, approximately 80% consider their pets to be family members, 17% consider them to be a companion and only 3% consider them property.”

Ultimately, the article strongly urges counselors to consider pet bereavement with equal empathy to human losses, which are given greater acknowledgment by society, and provide safe spaces for clients to work through their grief. “Giving a voice to individuals grieving a disenfranchised loss is one way in which counselors can help clients through pet loss,” the co-authors advise. “It is also important to integrate pet loss work into counseling interventions and coping strategies that are already being used in the therapeutic space.”

Complete Article ↪HERE↩!

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How Should Your Children Inherit?

— 4 Scenarios Where ‘Equal’ Is Not Appropriate

Equally sharing the wealth among the kids isn’t always fair, such as when one sibling is the primary caretaker, or another is already wealthy.

By Tracy Craig

Every estate planner has conversations with their clients about how children should inherit. While most people assume that children should inherit equally, many clients contemplate treating children differently for various reasons.

Here are some situations where an equal inheritance might not be appropriate, and the pros and cons of treating children differently.

Scenario #1: A Caretaker Child/Child Lives With the Parent

Many times, one child primarily helps an elderly parent. This could include helping with medical appointments, coordinating care with various health care providers, being heavily involved in end-of-life care, paying bills and companion care. Oftentimes, this care is provided by a child who lives with or is close to the parent.

Similarly, a parent may wish to give the caregiver child a larger percentage of the inheritance in recognition of the additional help provided.

Scenario #2: A Special Needs Child

If a parent has been the primary caregiver for a special needs child, then the estate plan should take this into account to ensure that the child will be properly taken care of after the parent’s death. Depending upon available government aid, this can often mean a special needs trust or supplemental needs trust for the child, with more or less than an equal share of the estate being held by the trust.

In this scenario, the other children can often be more understanding. In practice, many times the siblings are involved in the plan for caring for their grown sibling when the parents are no longer able.

Scenario #3: A Child With Issues

If a child has issues, such as mental illness, substance abuse, divorce or creditors, or if the child is bad with money, it may not be appropriate to leave an outright inheritance, or any inheritance, to that child. The same is true for an estranged child. The use of trusts to provide some (protective) support for such a child may be appropriate. Occasionally, disinheriting a child is the choice some families make.

Scenario #4: Children With Wealth Disparities

Sometimes a wealthy child may tell a parent to treat them differently and give more to other siblings, or a parent may feel that a very wealthy child does not “need” the inheritance. Wealth can change over a lifetime, so this should be well thought out.

What Is Right for You?

While these can all be sensible reasons to treat children differently, these are often difficult choices for parents to make. Many parents feel that they are morally obligated to treat their children equally; otherwise, after death, the children will harbor resentment and/or sibling rivalries will resurface, irreparably damaging those relationships.

It is important to be completely open and honest with your estate planning attorney. Everyone has family issues. While these conversations can be difficult, it’s best to give your estate planner all of the family information so these choices can be considered carefully. (Also, check out the article Should You Treat Your Kids Equally in Your Will? 12 Financial Planners Weigh In, in which financial planners share stories gleaned from their years of experience. Some stories end in disaster, but others offer the reassurance of a clear path to follow.)

Complete Article ↪HERE↩!

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How I mourned my sister through the books she left behind

— But in Emily’s library, I also saw a life well lived.

By Tom Rachman

My sister always wanted built-in bookshelves. So when she bought a one-bedroom apartment in downtown Washington, she hired a carpenter. Soon, there were glossy cookbooks as you stepped through the front door, fiction when you crossed the living room, travelogues by her desk, academic tomes at the foot of her bed. I remember admiring all her novels, saying I wished to have read all she had. So little time to read everything.

Emily turned 39 in November 2010. Her breast cancer was diagnosed three months later, and she died on May 16, 2012.

In late July of that year, near the peak of the punishing Washington summer, I flew to the city, which had been hers but which now bears for me the horror of what happened. I enjoyed the capital once; now, all I see are hospitals. But she had asked me to deal with her affairs, so I went to empty her apartment.

My first evening was so quiet, each room haunted with recent memories. I mumbled, addressing her when I stood before the shelves. “Dude,” I said, a term of affection we used reciprocally, especially when things were bad, “I can’t believe this happened.” I saw her shrugging.

Before me were pages into which she’d poured thousands of hours, from early childhood until a few months earlier. There were books with my inscriptions to her, others from a shared past that I now share with no one.

If you crave books, covet them, slam them shut in outrage, then they accumulate around you, becoming rows of memories: an edition lent at the start of a passion, never returned at the end; a volume cautioning against peril, or luring you to it; a book whose characters were your allies, even if you rarely frequent them today. But at the sight of that particular copy, you remember.

Emily’s library remained like a silent repository of her, and I had to dismantle it. I hesitated before taking out a first clutch of books, knowing that they would never slot back again.

I found a kids’ book, “The Snarkout Boys & the Avocado of Death,” that I always considered mine and she always believed was hers — a summation of how we had viewed childhood generally. Only later did our competition recede, each gaining affection for the other’s skills and craziness.

I found books on psychology written by our parents. Books she’d started but never finished. Books with sticky notes in them — she was passionate about sticky notes. I discovered packets everywhere, in neon pink, yellow, green. Each time I found a note in a margin, it made me scour the text for why. Marked in the Oxford Dictionary of Quotations: “Beauty is no quality in things themselves. It exists merely in the mind which contemplates them.” — David Hume.

Many of her books I associate with her childhood bedroom in Vancouver, where she read one astonishingly thick book after another, such as the red hardcover of “War and Peace,” which bears our father’s handwriting inside: “To darling Emily, With fondest love on your 12th birthday, from Mum & Dad. x x x x”

There are books I forgot I had given, such as “The Hitchhiker’s Guide to the Galaxy,” in which I (at age 15) printed in pencil: “Dear Emily, happy 18th birthday, I got you this book because it is very funny, and overall ace.”

The textbooks in her Washington bedroom charted Emily’s route after leaving home: the University of Toronto (two degrees in archeology before quitting a PhD); next to Boston (teach-yourself books on HTML from her days at dot-coms; volumes on mortgage-backed securities from the MBA program at Northeastern University, where she studied with Mike Dukakis, who encouraged her to take up public service); copious books on conflict in Afghanistan (first at the Government Accountability Office in Washington, then at the Special Inspector General for Afghan Reconstruction, finally joining the RAND Corporation days before her diagnosis).

I found books such as “The Noonday Demon: An Atlas of Depression” that made me wonder if there were aspects of her life I hadn’t known about. Closer inspection found a marked page on alcoholism — not a problem for her, but for a man she was once with. I found reminders of joyful times, too, including an evening she’d passed kidding with one of her favorite comic writers, John Hodgman, who inscribed his book “The Areas of My Expertise” in silver marker with the words, “To Emily — I’m a Zeppo man, myself.” (They’d been discussing the respective merits of the Marx Brothers.)

One book that remained unread was “The Emperor of All Maladies: A Biography of Cancer,” which she bought during her illness but could not bring herself to open. Another volume was “Griftopia” by Matt Taibbi, which our brother gave to Emily during the final stages of her life. It was, I believe, the last book she began. The corner of page 65 is folded.

I considered shipping her entire collection (perhaps 800 volumes) to my home in London. But my apartment — small and bereft of shelving — was already overwhelmed by reading material. More important, not all these books had been of value to her, including potboilers she’d hidden behind rows of classics. And the academic tomes would be better in the hands of experts.

I phoned charities to donate, if only they would kindly pick them up, because I was visiting the capital and had no car. None agreed. One offered grandly to let me deliver the books at a certain hour, at which point they’d sort through them, and send me away with those they didn’t care for.

I tried used bookshops next, offering them for nothing. I explained the situation: I just wanted homes for my sister’s books. “The owner’s gonna call you back,” one store clerk said. He never did.

I tried another store. “I’ll box up the books,” I offered. “I’ll wait for your delivery truck.” Nope. “If I rented a vehicle and brought them to your store?” They told me I had to trek to a warehouse somewhere far away in Maryland; my offer seemed like a hassle to them.

With time running out before my departure, I hired a removal company that promised to donate the books to the local Goodwill charity. I recoiled at the sight from her fourth-floor window: movers tossing boxes of Emily’s books onto an open-backed truck.

I kept about 250 volumes. The books sat on the floor behind me in my study, piled where my girlfriend and I had spent two afternoons writing “Emily Rachman” in the front of each, to ensure that they never just dissolve into my collection.

Months passed before I could alphabetize hers among mine. My study remained impassable with Emily’s books. I devoted myself exclusively to reading as many as I could — an imagined dialogue, as happens whenever books are borrowed, one reader hearing the perceptions of who preceded.

I dipped into her Maupassant short stories and “Droll Stories” by Balzac. I finished “Eating the Dinosaur” by Chuck Klosterman and “The Executioner’s Song” by Norman Mailer. I re-read “84 Charing Cross Road” by Helene Hanff, not intending to, but unable to stop after the opening page. I went through “Learned Optimism” by the psychologist Martin Seligman, a family friend who dedicated this copy on Sept. 14, 2011: “For Emily, with high hopes.”

Once, a successful novelist took me aside after dinner. We had been talking about death, although I can’t remember why — possibly an offshoot of an exchange about poems. As if confiding a secret, speaking softly so other diners might not hear, he said: “We, as writers, get a bit of immortality. We live on in our books.”

Emily never wrote a book. She would have; I know that. Indeed, for months before she died, she had been working on an anthology of food in great literature. A book on Afghanistan was possible, too. And more still on whatever else she would have pursued, her life being a whoosh of activity, and sure to go on in that surprising fashion, had she lived beyond 40.

When I left her apartment, the built-in bookshelves were empty but for the dust. What, I wonder, have the new owners placed there? Books? Something else altogether? They’ll never know the jubilation those shelves once brought to a young woman.

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End-of-life planning with loved ones can be hard.

— Here’s where to start.

How to make sure you know what they want so you can honor their wishes without having to guess.

by Marin Cogan

Confronting the fact that our loved ones will someday die — that we all will — is one of the hardest parts of being human. Most of us don’t like to think about death, and as long as it doesn’t feel urgent, it’s easy to avoid discussing it with family and friends.

Avoiding the reality, though, is risky. It increases the likelihood that we’ll be unprepared to make medical decisions when we need to make them. If we’re forced to make choices for an incapacitated loved one and don’t know what they want, we might agonize over whether or not we’ve made the right choice.

Over the last few years, I’ve been talking to my parents about death, in part because of my dad’s health complications, which include a pneumonia infection that nearly killed him last year. In my family, almost no subject is taboo, including death; often, my dad is the one who brings it up. I know that he has advanced directives and long-term care insurance, and that he doesn’t want overly invasive medical treatment, especially if it’s just delaying the inevitable. I know that he would prefer a quick death to a drawn-out decline. I also know — as does he — that we can only plan for so much, and that most of us don’t ultimately get to choose how we die.

Still, there’s a lot that can be planned for, and it goes beyond estate planning and establishing a will (more on that below). The advances in medicine over the last several decades mean that people have more decisions to make about their end-of-life care than they ever have before. That makes it even more important for individuals to start considering what’s most important to them now.

Not everyone feels ready to have these sorts of conversations with their loved ones. But waiting too long can create a different kind of anxiety. So I spoke with four experts — a doctor specializing in neurology and palliative care, a death doula, a bioethicist, and the leader of an initiative to help patients and their families discuss end-of-life wishes — about how to start having these crucial conversations.

Consider what you hope to learn from a conversation, but don’t be too attached to an outcome

It’s helpful to think about what you might want to have come out of an initial conversation. There’s plenty to consider when trying to prepare for end-of-life plans, and lots of online resources with different checklists. Most involve establishing a will, which lays out where a person wants their assets to go after they’ve passed away; another option is to establish a trust, which is a legal entity to which a person can assign a trustee to manage assets after they’ve passed.

But for the first conversation, experts say, you shouldn’t focus on any of that. You want to keep it general and get a sense of where the person is at. What you’re really doing is gauging whether they’re open to talking about what they want from the end of their lives, what kind of planning they’ve already done, and how you can best support them in the process.

If they seem open to it, you might try to find out whether they’ve appointed what’s sometimes called a health care proxy, or a health care agent, or a durable power of attorney. Different states and institutions sometimes use different terms to describe this person, but essentially, it’s someone who can make medical decisions for a patient if they’re incapacitated or unable to speak for themselves. You may also ask whether they’ve established an advance directive: a document that lays out a patient’s specific wishes regarding the use of medical procedures and devices like ventilators and feeding tubes.

If you’re feeling nervous or worry they might not be ready to discuss these topics with you, understand that it’s fine — and probably even preferable — to initiate with open-ended questions and to prioritize being open to your loved one’s thoughts over trying to check things off a list.

That might mean letting go of expectations and keeping things in the realm of the general at first. “It’s easier to talk about how you want to live your life through the end, as opposed to how you want to die,” says Kate DeBartolo, who runs the Conversation Project. On the Conversation Project’s website, there are guides to help people begin those conversations. They focus on introspective prompts and questions, such as, “What does a good day look like to you?” and, “What matters to me through the end of my life is …”

The idea, DeBartolo says, is to get people thinking about their values, which can help clarify what kind of say they’d like to have in their medical care. “We talk to people who want every measure taken — every trial drug, every curative treatment until the end — and other people who absolutely don’t want that,” says DeBartolo. There’s no right or wrong answer to those questions. “The emphasis is on living well through the end, and what matters to you, not what’s the matter with you. Making sure that those conversations don’t get too medical or legal right away can be helpful,” she says.

Find an opening

There’s no perfect way to start this kind of conversation, but there are ways to make it easier, says Jamie Eaddy Chism, director of program development for the International End-of-Life Doula Association. Sometimes, it helps to take the pressure off of loved ones by talking about yourself. “Something like, ‘I’ve been really thinking today about how I want people to remember me, and what I want people to do and say when I’m not here anymore,’” Eaddy Chism says. “Using yourself as an example disarms the person a bit because they don’t immediately have to think about their own situation. Then you can ask a question like: How would you want people to remember you?”

Sometimes, pop culture provides an opening. Look for TV shows, books, or movies that everyone is reading or talking about that deal with death. They can be great conversation starters for families because they aren’t inherently personal but might invite further reflection — the season finale of This Is Us, which aired earlier this year, was a great conversation starter, Eaddy Chism says. There’s also Extremis, a short documentary on Netflix, that explores the tough choices that patients and family members have to make about whether or not to pursue more aggressive medical treatment near the end of their lives, and Being Mortal: Medicine and What Matters in the End, Atul Gawande’s 2014 bestseller about the challenges that advances in medicine have posed to patients, doctors, and caretakers.

Context can be crucial, too. Cultural backgrounds, religious beliefs, prior experiences with the health care system, and even a family’s unique culture and communication style might play a role in how you start a conversation. Some family members might not like the term “death,” but may prefer terms such as “transitions” or “passing away.” “Understanding how language fits into the conversation is important,” Eaddy Chism says, “so you choose your wording in a way that invites people into the conversation.”

Listen — and be aware of your preconceived notions

A good conversation “starts with really listening,” says Alan Carver, who specializes in neurology and palliative care at Memorial Sloan Kettering Cancer Center. “You really want to give the people that you care about the opportunity to share how they feel — and it can be hard to do if you’re doing all the talking.”

>Active listening means being open to any kind of response, even if it’s a dismissive one. You can’t force someone to prioritize a conversation if they share different values, and that’s important to listen for, too. “Different people respond very differently,” says Mildred Solomon, president of the Hasting Center, a bioethics research institute. “I know some people who are desperate for their children to hear their preferences, and they feel their children are refusing to talk about anything about the parent’s death,” she says. “On the other hand, I know people who don’t want to anticipate the possible downward trajectories and want to live in the moment. I respect that whole range.”

It’s important, when talking to elder loved ones, not to try to predetermine how we think they might react. Adult children, for example, tend to think they know their parents well, including their weaknesses, their biases, and their anxieties. But it’s key to remember that our parents have their own complex experiences and histories, and no matter how well we think we know them, we still mainly know them in the context of child and parent, meaning there is a lot we might not understand about them. Going in with preconceived notions about how they’ll respond makes it harder to hear what someone wants — and makes it more likely that conversations will become unproductive. “Listening requires you to catch your assumptions as they come so you can remain present with the person,” Eaddy Chism says. “It’s about giving people the freedom to be discovered, and giving yourself permission to discover new things.”

What if your loved one reacts poorly or refuses to engage? Apologize and try not to get defensive, says Eaddy Chism. She suggests you try something like: “I’m so sorry that this conversation made you feel like this. I know this was really uncomfortable, and I also know that I want to honor you. Can we try again later?” If they seem calm enough, you might try exploring why they reacted so strongly. Or you can redirect to something that might seem less scary, like: “I know you don’t want to talk about whether you want to be buried or cremated, but can we talk about hospital stays? What would you want in a hospital stay?” Still, she says, there’s only so much you can do with a family member who doesn’t want to engage. “Let’s be completely real in this, there are some conversations that we never return to, that people avoid and that we never have again. Don’t take that on as your own baggage,” she says.

Pace yourself

The benefit to having these conversations with loved ones early is that it ensures that the person’s wishes are respected and that decision-making is easier for loved ones. But it doesn’t need to happen all at once, nor is it something that families have to handle by themselves. If someone is sick, Carver says, their doctor can and should work closely with patients and families to identify how much information they want about the course of an illness, what their priorities are, and to help with decision-making. Sometimes it means letting a family know they should move a wedding date earlier, or take a planned vacation in the next calendar year rather than indefinitely putting it off.

It’s also important to understand that while there may be several decisions to be made, there are resources available to help them do it; it’s not going to be easy or practical to try to do everything at once. “These are conversations to have over time,” Carver says. “It’s not like you sit down once and do it and then it’s over. It’s really over the course of a lifetime.”

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