What Does Animal Grief Tell Us About How They Understand Death?

Justin Gregg on Mourning Rituals and Death Wisdom

By Justin Gregg

“How strange that this sole thing that is certain and common to all exercises almost no influence on men, and that they are the furthest from regarding themselves as the brotherhood of death!”
Nietzsche
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Tahlequah was twenty years old when she gave birth to her daughter on July 24, 2018. Although the infant was full term, she died shortly after birth. Under normal circumstances, there would be an expert on hand to determine the cause of death. But these were not normal circumstances.

Immediately after the baby died, Tahlequah did something that would soon take the world by storm. She began carrying her dead child with her everywhere she went. She did this for weeks on end in what witnesses called a tour of grief. During this period, she rarely ate. When she slept, members of her family would take turns carrying the infant themselves. “We do know her family is sharing the responsibility… that she’s not always the one carrying it, that they seem to take turns,” said Jenny Atkinson, who watched the event unfold.

International news outlets traveled to Seattle, Washington, to bear witness to Tahlequah’s grief. There was an outpouring of sympathy from all over the world. People wrote poems about her. They posted drawings of her carrying her baby on Twitter. There was an op-ed in the New York Times from the author Susan Casey on how best to process the collective pain the public felt at watching this mother grieve.

On August 12, 2018, after seventeen days, Tahlequah finally let her infant go. Her body sank to the bottom of the Pacific Ocean. A few days later, scientists from the Center for Whale Research at Friday Harbor in Washington confirmed that Tahlequah had moved on, hunting salmon off the coast of the San Juan Islands. She was back to her old self.

Are humans better off than other species because of our understanding of death?

If it wasn’t clear by now, Tahlequah is not a human. She is an orca—popularly known as the killer whale, the largest dolphin species. Jenny Atkinson was also not just a witness, but the director of the Whale Museum in Washington, closely monitoring this unprecedented event. There are many examples of this behavior by dolphins in the peer-reviewed scientific literature: mothers carrying the dead bodies of their infants on their rostrums (beaks), constantly pushing them toward the surface. Dolphins care for sick or ailing family members in this way, supporting them near the surface to help them breathe.

However, calf carrying typically only lasts a few hours. Which is what makes Tahlequah’s seventeen-day vigil so unique. It was so long that her own health was affected. She was noticeably skinnier after weeks of not eating, focusing instead on pushing her calf through the water. Even scientists trained to dispassionately observe animal behavior were visibly shaken. “I am sobbing,” said Deborah Giles, a research scientist for the University of Washington Center for Conservation Biology. “I can’t believe she is still carrying her calf around.”

Many newspaper reporters described Tahlequah’s behavior as an example of mourning, as an indisputable example of animal grief. These stories were peppered with words like vigil and funeral, concepts that are bound tightly with an understanding of—and response to—death that we typically think of as the domain of humans, not animals. Some animal behavior experts, however, argued that describing calf carrying as a product of grief is nothing more than anthropomorphizing, attributing humanlike emotions and cognition to animals unjustly. “We dilute a real, powerful and observable human emotion by granting other animals the same emotions so freely without any scientific rigor,” argued the zoologist Jules Howard in The Guardian.

I don’t want to spend this chapter litigating the pitfalls of anthropomorphism, however. Instead, I want to tackle the specific problem of what death means to non-human animals. Because death means something to them. It meant something to Tahlequah. But what? This chapter is dedicated to figuring that out. And at the end of this chapter, even if we are sure that humans understand the meaning of death on a deeper level than Tahlequah or other animals—on such a deep level that we should reserve words like grief and mourning for our species alone—we are still left with a bigger question. Are humans better off than other species because of our understanding of death?

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What do animals know about death? Darwin himself wondered about this, asking in The Descent of Man, “Who can say what cows feel, when they surround and stare intently on a dying or dead companion?” Almost 150 years later, the anthropologist Barbara J. King published a book—How Animals Grieve—citing countless examples of animals from across the taxonomic spectrum reacting to the death of a social partner or family member in ways similar to Tahlequah. Her examples range from animals we typically associate with intelligence, like dolphins, to animals we don’t. “Chickens, like chimpanzees, elephants, and goats, have a capacity for grief,” writes King.

The question of what animals know about death (and thus how they grieve) is part of comparative thanatology—a field of scientific inquiry attempting to understand animals’ death-knowledge. Comparative thanatologists want to know how an animal knows whether something is alive or dead, and what death means to them.

Ants, for example, know something about death because a dead one will release necromones—chemicals only present when decomposition sets in. When another ant smells necromones on a dead ant, it will carry away the body and dump it out of the nest. But you can trigger this same body-removal response (called necrophoresis) by spraying any ant with necromones and watch as other ants carry them kicking and screaming out of the nest. This does not suggest that ants have a particularly sophisticated knowledge of death, and only a very limited way of recognizing it.

But other animals react to death in ways instantly recognizable to us. The carrying of dead infants is not limited to dolphins. It is also commonly observed in most primates. Mothers will carry the body of their infant for days or even weeks at a time. This is often accompanied by behaviors that look, to a human, like grief: social withdrawal, mournful vocalizations, and a “failure to eat or sleep,” as Barbara King describes it. But grief, if that is indeed what we are witnessing, is not synonymous with an understanding of death.

Dr. Susana Monsó is a philosopher with the University of Veterinary Medicine Vienna whose research focus is the concept of death in animals. She argues that “grief does not necessarily signal a [concept of death]—what it signals is a strong emotional attachment to the dead individual.” This sets up a scenario where there are different levels of sophistication when it comes to an animal’s understanding of death.

The most basic is called a minimal concept of death, a kind of death-knowledge that many—if not most—animals have. Monsó argues that for an animal to have a minimal concept of death, it need only be able to recognize two simple attributes: “1) non-functionality (death stops all bodily and mental functions), and 2) irreversibility (death is a permanent state).” An animal is not born knowing these things, but learns about death through exposure.

Grief, if that is indeed what we are witnessing, is not synonymous with an understanding of death.

Monsó explained to me that “for an animal to develop a minimal concept of death, she must first have some expectations regarding how beings in her surroundings typically behave.” For example, soon after being born, a young dolphin would quickly learn how living things behave. She would expect other dolphins to move their flukes up and down to swim through the water, chase and eat fish, and make lots of whistling and clicking sounds.

But when she first encounters a dead dolphin, she will notice that none of these things are occurring. And if she observes the dead dolphin long enough, she will learn that it’s a permanent state. Her mind will then be able to categorize the world into living and no-longer-living things. Monsó argues that a minimal concept of death is “relatively easy to acquire and fairly widespread in nature.” It does not require particularly complex cognition. Grief, then, can crop up as a rather straightforward emotional response to the permanent nonfunctionality of a social partner or family member.

It’s important to understand, however, that just because a dolphin can recognize death, it does not mean she understands her own mortality. Or that all living things must die. These are two additional levels of understanding that nonhuman animals lack. According to Monsó, “a very sophisticated notion of personal mortality also incorporates the notions of inevitability, unpredictability, and causality. They might acquire, through an accumulation of experiences with death, a notion that they can die, but probably not that they will die. I think that such a notion is probably restricted to humans.”

There seems to be consensus among scientists and philosophers that there is a fundamental difference between what animals and humans understand about death, especially the awareness of mortality itself. “Among animals,” writes King in How Animals Grieve, “we alone fully anticipate the inevitability of death.” This is called mortality salience: the scientific term for an ability to know that you—and everyone else—will one day die. I prefer the more poetic term death wisdom.

When my daughter was eight, we heard her crying in her room not long after we read her a bedtime story and said good night. She was sitting up in bed looking particularly miserable. She explained that she was thinking about death, and that one day she would lose her eyes and never open them again. Never see, or think, or feel anything anymore. She was scared, but also described a kind of existential dread that was new to her. I suspect that it’s a feeling you, too, recognize: the crush of sadness that overwhelms the mind when contemplating the reality of one’s own death. It was not something that my daughter had ever spoken about—or experienced—before that moment. And it was heartbreaking to watch.

Complete Article HERE!

11 Important End of Life Documents Everyone Needs

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11 End of Life Documents for Mesothelioma & Cancer Patients

Although patients can outlive a prognosis and even reach remission, mesothelioma remains one of the worlds most deadly conditions. This is why mesothelioma patients should take as many measures as possible to ensure their personal finances and responsibilities are covered. Many people have a will prepared, but there are several other end of life documents that are essential family members or patients dealing with mesothelioma. Without these kind of documents, loved ones will have to make difficult decisions on your behalf with no guidance. Although it may be difficult to discuss, Mesothelioma Hub feels it is still necessary to prepare for the worse. Here is our list of eleven essential documents that all families should prepare while dealing with a mesothelioma prognosis.

1) Letter of Competency

A letter of competency is one of the first end of life documents to complete during your planning. A letter of competency is a statement from a mesothelioma doctor or specialist stating that a person is capable of making informed, stable decisions. This end of life document could apply to health care, finances, or estate. A common side effect of mesothelioma treatment is memory loss, confusion, and brain fog. Therefore, it is essential to obtain a letter of competency if applicable.

2) Living Trust End of Life Document

A living trust is another essential piece of end-of-life paperwork. A trust is created and funded during a patient’s lifetime that they can amend or revoke as time goes on. A living trust appoints a person or corporation to act as a “trustee” after their passing. The document also designates the “beneficiaries,” aka the people who receive income or other property from the trust. This trustee manages the trust property for the benefit of the beneficiaries.

The average lifespan for a mesothelioma patient after receiving a diagnosis is 4 – 18 months. A living trust is an end of life document that you should assemble as quickly and efficiently as possible during your end-of-life preparation and especially during the more advanced terminal stages.

3) Last Will and Testament

A last will and testament is the legal end of life document specifying a patient’s last wishes pertaining to assets and dependents after death. Although similar to a living trust, the last will controls property directly under the control of the individual and does not include jointly owned assets whereas a living trust controls all assets. Details included in the last will and testament include what to do with possessions, and what will happen with their responsibilities including dependents and management of financials.

4) Letter of Intent

Although not a legal document, a letter of intent can be beneficial for your executor and family members. A letter of intent can act as an end-of-life checklist for your loved ones for wishes not covered in a will. The document can include the location of important legal end of life documents, names and contacts, care for pets, and many more details. It should remain a high priority for those with wishes that can’t be fully explained within other documents.

5) Financial Power of Attorney

The purpose of a financial power of attorney is to designate an agent to handle financial affairs. This person has the legal ability to make decisions about a person’s finances when someone is ill, disabled, or physically not present. The agent should make arrangements in line with the person’s wishes but has full authority to make autonomous decisions until their authority is challenged or revoked by the law.

Many people on their life journey were negligently exposed to asbestos and developed mesothelioma. This is where your a financial power of attorney can come in and assist with the legal side of things and even pursue legal help and compensation.

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6) Health Care Power of Attorney

If a patient is unable to make medical decisions for themselves, they may choose to have a health care power of attorney. A health care agent should be someone trustworthy and noble as they can:

  • Accept, withdraw, or decline treatment
  • Agree to admit or discharge a patient from any medical center or institution
  • Access medical and mental health records and share them with others
  • Carry out plans or make decisions about the body or remains

Throughout the mesothelioma journey, several health-related decisions will need to be made. Whether you are going through treatment or are staying in an assisted living home, a health care power of attorney can assist you in these decisions and maintain important end of life documents.

7) Living Will End of Life Document

A living will is a vital facet of a patient’s end-of-life plans. This document declares a patient’s desire to have death-delaying procedures withheld after being diagnosed with a terminal illness. This end of life document can assist doctors and loved ones if a decision needs to be made about withholding death-delaying procedures.

The medical community considers mesothelioma a terminal illness. If you are interested in death-delaying procedures being withheld, you should complete a living will.

8) Organ Donor Care

Those interested in donating their organs should complete a health care directive stating their wishes. If arrangements have already been made, specifying an end of life document should include all necessary information. If a patient has a health care agent, they can also make the decision with guidance from the patient.

9) HIPAA Release

Health care information of everyone is not accessible by others before or after their death. However, a HIPAA release form shares otherwise protected health information with other individuals or organizations. Patients should file a HIPAA release form if they would like their health care agents or loved ones to have access to their important end of life medical details.

10) DNR Order End of Life Document

A health care provider will typically begin CPR and life-saving activities if the heart or breathing stops, however, people can choose to not receive care under these circumstances. A do not resuscitate (DNR) order states that a patient prefers to not receive CPR in the case that the heart or breathing stops.

Many mesothelioma patients that pass, developed the condition due to negligence. The patient’s loved ones may be eligible to file a wrongful death suit against the individual or company believed to be responsible for negligence. Thats why it’s so important for to keep all your family members end of life documents secured and organized.

11) Digital Asset Instructions

Nowadays, the average person has almost 200 digital accounts including bank, investment, insurance, cryptocurrency, and social accounts. Some of these accounts, if not all, will need attention after a person passes. If these accounts are password protected, a patient should assemble a list of login information. Patients can even assign a digital executor to manage online accounts after they pass.

Complete Article HERE!

Choosing hospice care for seniors

By SeniorsMatter Staff

At a certain point, the emphasis shifts from keeping terminally ill seniors alive to keeping them as comfortable as possible. Saying goodbye to our loved ones can seem unbearable. But the silver lining is that your senior doesn’t have to suffer unnecessarily. Instead of continuing painful and tiresome treatments until their last moments, a senior’s care plan can change to focus on quality of life. Hospice services are often the best senior care option when a serious illness becomes terminal. A hospice provider will focus on compassionate, dignified end-of-life care.

If you’d like to learn more about options for hospice care in your area, our Resource Hub can help you easily track down senior care services in your neighborhood. This free online resource contains detailed listings of local hospice services, allowing you to assess and choose the best options for your senior.

In this article, we’ll explore everything you need to know about hospice care. This type of care is a common choice for those facing a terminal illness, and the National Hospice and Palliative Care Organization reports that more than 50% of Medicare recipients were enrolled with a hospice provider at the time of their death.

In 2014, the Huffington Post reported that the hospice industry in the United States had quadrupled in size since the turn of the century—to the point where 65% of all Americans spend the last stage of their life in hospice services. But how do you know if this type of care is right for your senior?

Hospice care: allowing your senior to die with comfort and dignity

What is hospice care?

The goal of hospice care is not to cure your senior or extend their lifespan. Instead, hospice care professionals strive to make the last few months of your senior’s life as peaceful and as comfortable as possible by addressing pain and other problematic symptoms in the best way possible.

The end result is a dignified death that allows seniors to spend more time creating valuable memories with family members instead of preoccupying themselves with futile medical care.

Hospice care is only for seniors with terminal diagnoses. If there’s still a reasonable hope for a full recovery, hospice services are not recommended. Some seniors take it upon themselves to choose a hospice care plan when faced with months of grueling surgeries, chemotherapy and overnight hospital stays. They’re perfectly within their rights to refuse medical treatment as long as they are of sound body and mind.

If your senior has become incapacitated for whatever reason (either physically or mentally), family caregivers may choose a hospice care provider on their behalf.

Hospice care involves a number of services, including:

  • Medical social services
  • Occupational therapy
  • Physical therapy
  • Speech therapy
  • Caregiver support
  • Grief support
  • Medical equipment
  • Physician services
  • Pain medication
  • Nursing services
  • Counseling
  • Spiritual support
  • Emotional support

When should my senior start hospice care?

If you start hospice care too early, your senior may miss opportunities for potentially lifesaving treatment. On the other hand, starting hospice care too late can reduce the positive impacts this type of care can have on quality of life.

According to a report released by the National Hospice and Palliative Care Organization (NHPCO) in 2019, the average time Medicare patients spent in hospice during 2018 was about 90 days. However, about 28% of beneficiaries spent seven days or less in hospice care—which the NHPCO considers far too short to be beneficial. 

Generally, hospice care is provided when a senior has less than six months to live.

Is hospice care the same thing as palliative care?

Both hospice care and palliative care are types of “end-of-life” care options for seniors. However, they’re not the same. Palliative care is provided while a senior continues to receive medical care for a terminal condition, while hospice care essentially abandons any potential cure or treatment and focuses entirely on comfort.

Why would my senior need hospice care?

In order for a senior to be eligible for hospice care, they must have received a terminal diagnosis. Seniors may benefit from a hospice care plan if they feel like they can no longer face further painful and uncomfortable medical procedures. Many seniors accept the reality of their situation and choose to die on their own terms instead of fighting for a highly unlikely recovery.

What are some signs my senior should seek hospice care?

There are a number of signs that could suggest it’s time to consider hospice care:

  • Treatment is no longer having any effect.
  • Your senior no longer wishes to receive aggressive intervention.
  • The side effects of their medical treatments are becoming difficult to manage.
  • They seem confused or drained by constant medical treatments.
  • They are losing the ability to communicate effectively.
  • They are losing their appetite.
  • They spend much of their time sedated or sleeping.
  • Medical professionals indicate that continued treatments will provide no benefit.
  • Your senior expresses a desire to die on their own terms.

Questions to ask yourself as you consider hospice care

  • Is my senior suffering from a life-limiting disease or illness?
  • Is my senior suffering serious signs of decline?
  • Shouldn’t my senior die on their own terms?

What services does hospice care provide?

Limiting pain and increasing comfort

Seniors who receive hospice care can limit pain with a number of options, and their pain can be controlled without frequent trips to the hospital. Whether your senior is aging in place or living in a nursing home, hospice care can make their days as comfortable as possible. For example, medical appliances and supplies can be brought to their residences (such as hospital beds and wheelchairs).

Certain therapeutic treatments can also provide relief to seniors, including physical and occupational therapy. Note that this therapy is not intended to “cure” your senior; it’s only intended to make their life more comfortable. Hospice care features a strong emphasis on holistic well-being, and it may include home health care, nursing services, medication and even respite care for family caregivers. These services are often available around the clock.

According to the National Hospice and Palliative Care Organization, 65% of seniors who entered hospice care experienced a drastic reduction of pain within just 48 hours.

Emotional support

Seniors can also receive emotional support from trained professionals when they choose hospice care. Confronting our mortality is never easy, and a range of mental health care experts, social workers, counselors and other skilled individuals can help seniors find peace and well-being as they approach the end of their life.

Spiritual support

Seniors who choose hospice care may find themselves seeking spiritual guidance. Religious leaders can visit your senior as part of their hospice experience, helping seniors navigate the process of death and consider the afterlife. Some religions suggest followers go through certain steps before they leave the world.

Limiting medical procedures

Another important aspect of hospice care is limiting medical care. If your senior chooses hospice care, they can stop undergoing difficult treatments, such as chemotherapy or dialysis. However, they may still continue with other types of treatments, such as medication for low blood pressure.

Questions about hospice care

What types of options are available with hospice care?

Hospice care can be divided into the following main categories:

  • Nursing home hospice care
  • In-home hospice care
  • Hospice care facilities

Nursing home hospice care is an excellent choice for seniors who need to remain in long-term care facilities, while home care can be delivered to those who are aging in place. Although your senior may also attend dedicated hospice care facilities, excessive transportation is not recommended for those with terminal illnesses. For this reason, the first two choices are most common.

Is hospice care safe?

Hospice services are an established part of the medical industry in the United States, and it’s completely safe when carried out by qualified, experienced professionals. Hospice care is often misinterpreted as “helping someone to die,” but medical treatment still continues until the moment of death.

Is hospice care available for Alzheimer’s disease and other forms of dementia?

Hospice care can be catered to the needs of seniors with Alzheimer’s or dementia. Along with the aforementioned services, dementia-specific hospice care options include:

  • Mental health care support specifically geared toward dementia
  • Feeding
  • Respite care for overwhelmed family caregivers

What questions should I ask hospice care providers?

  • What will my senior’s hospice care cost?
  • Does my senior meet the criteria for hospice care?
  • How long will my senior survive on hospice care?
  • What kind of workers/medical professionals will be assisting my senior?
  • Are counselors and social workers included in hospice care?
  • How often will nurses and other medical professionals come to help my senior?
  • How will you manage my senior’s pain?
  • What is the role of a hospice doctor?
  • What happens if my senior’s condition improves?
  • What happens if I decide to halt hospice care?

How to talk to family members about hospice care

Broaching the topic of hospice care can be uncomfortable. It’s important to approach this topic in a careful, considerate manner.

Hospice care is a topic you should also discuss with the entire family. Some family members may want your senior to continue fighting until the bitter end and may not want to accept that the battle is already lost. When you discuss this type of care, try to bring the entire family together and give each person a chance to speak.

How to approach the topic of hospice care with your senior

Seniors may not want to confront the possibility of their own mortality, and the conversation may become extremely emotional.

On the other hand, many seniors achieve a sense of calm and focus when they accept their fate, and they may be glad that you brought up the possibility of hospice services. Indeed, they may be thankful that you’re giving them the option to end life on their own terms and cease painful treatments.

Questions to help a senior consider hospice care

  • You’ve been fighting your illness for so long. Wouldn’t you like to be more comfortable now?
  • Wouldn’t you like to go out on your own terms?
  • You’ve been spending so much time in the hospital. Wouldn’t you like to spend more time with your family members before you leave us?

Paying for hospice care

How much does hospice care cost?

The cost of hospice care depends on the services and treatments your senior requires. Some seniors require only pain control and emotional support, while others might require more extensive care options like rehab, medical equipment and more. It’s worth noting that hospice care will probably be cheaper than continuing additional medical treatments that will not cure your senior.

Can I get help paying for hospice care?

The good news is you can get help paying for hospice care from a number of potential sources:

  • Medicare: Medicare can provide funding for hospice care under certain circumstances. Medicare’s hospice benefit applies if your doctor certifies your senior has a life expectancy of six months or less. Once your hospice benefit begins, Medicare will not cover anything intended to cure the terminal illness but will cover all hospice care costs.
  • Medicaid: The Medicaid hospice benefit provides nursing, physician services, counseling and more to those with a terminal diagnosis. Coverage includes home care, short-term inpatient care, respite care, equipment and more. Patients must file their election statement with a chosen hospice provider to be eligible.
  • Veterans Benefits: Veterans Benefits provides VA Palliative Care for enrolled veterans. Coverage includes the cost of a health care team, which not only includes medical professionals but also mental health workers and chaplains.
  • Private insurance: In some cases, private insurance plans will cover hospice care. However, it really depends on your specific plan, and you’ll need to read the fine print to be sure.

How can I find hospice care near me?

If you’ve been searching for hospice care near you, it’s easier than ever to locate qualified, reputable care options. Refer to our Resource Hub for detailed listings of hospice care providers in your neighborhood. It’s as easy as visiting this free online resource, browsing your options, and choosing the best hospice care provider nearby.

Complete Article HERE!

Simulation in medical school helps prepare doctors to care for dying patients

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Simulated experience of caring for a dying patient and their family can improve the confidence and preparedness of medical students to provide such care, according to a new study by Brighton and Sussex Medical School (BSMS) published in BMJ Supportive & Palliative Care.

Immediately after the simulations were completed, student confidence almost doubled (98% increase) in relation to communicating with dying patients and their family. Confidence in patient management increased by two-thirds (66.2%), and increased by almost one half (48.4%) for multidisciplinary working. These increases in confidence were sustained when measured again six months later.

Qualitative measurements of preparedness demonstrated that students welcomed greater exposure to hands-on teaching on the care of dying patients, and felt better prepared to provide this care following the simulated experience.

Lead author Dr. Geoff Wells, Honorary Clinical Lecturer at BSMS and ST6 Registrar in Palliative Medicine at University Hospitals Sussex NHS Trust, says that “Foundation Year 1 trainees, straight out of , can feel anxious, poorly prepared and unconfident in providing care for dying patients.”

“Our study showed that after a series of simulation sessions reported a marked increase in , which was maintained six months later.”

Year 4 students at BSMS took part in eight half-day simulation sessions, which used a hi-fidelity mannikin (with pulse, breathing sounds and chest movements) to represent an unconscious, dying patient and an actor to play a family member. A range of scenarios were played out, including some in which the patient died.

Dr. Wells added that they “use simulation to teach many areas of medicine, particularly in managing acute emergencies, and this is known to be an effective teaching tool. As with an , with a dying patient you also have a to provide appropriate and competent clinical care, with a single opportunity to get it right—so there are parallels between the two situations.”

“Ultimately, we believe developing simulation in palliative care teaching could reduce distress among , with the patient dying comfortably, and with any previously unmet needs having been addressed.”

Following the success of this study, these simulations are now being incorporated into the BSMS undergraduate curriculum so that all students will have the opportunity to learn from simulated care of the dying scenarios. This will also provide many opportunities for further study with much larger participant numbers.

Complete Article HERE!

Finding A Reason to Stay Alive Past Age 75

At 90, a grieving widower read an essay from medical ethicist Dr. Ezekiel Emanuel and realized he’s grateful for all his years, even in the face of sadness

I understood my life would have purpose only if I touched others with acts of kindness and brought love to every encounter with my family and close friend

By Robert W. Goldfarb

Dr. Ezekiel Emanuel, an oncologist, medical ethicist and adviser on health care to President Obama, decided he wanted to die when he became 75 years old. He announced his intention in an essay in The Atlantic Monthly when he was 57. Emanuel saw only decline after 75, when the heights to which he had ascended would pitch downward.

As a father, he would have already celebrated the college graduations and career choices of his children, their marriages and the birth and growing independence of his grandchildren. It would be time, he felt, to abdicate the role of patriarch, stepping aside so his children could climb their own mountains.

When Muriel died suddenly and unexpectedly, grief mounted my back and drove me into despair’s black waters.

As a physician, concern that declining dexterity, reading of medical advances but not leading them, being a patient rather than treating patients and taking medication he previously prescribed, only hardened his resolve. He would die up there on the mountain, not laced to a catheter in a nursing home down in the valley. Emanuel is now 65, and nothing he’s written since that I’ve read indicates he’s changed his mind.

Finding A Way to Live

Shortly after my wife died in the early days of the pandemic, a friend sent me Emanuel’s essay. I had already lived 15 years beyond my own 75th birthday and was thankful I hadn’t read the article in the first agonizing months of my loss. For Emanuel, 76 years would have been one too many to live. Would his words have tempted me to think a day without Muriel was one too many to endure?

When Muriel died suddenly and unexpectedly, grief mounted my back and drove me into despair’s black waters. Had I already read Emanuel’s essay, I might have stroked deeper, hoping to drown. But I hadn’t read it and imagined the arms of my children thrashing the dark water, hoping to grasp my hand and pull me to the surface. My death, so soon after their mother’s, would have devastated the family Muriel and I had built. I would have to find a way to live even if I wanted to die.

Since I was 22, just off a troop ship from Korea, I turned to Muriel in moments of uncertainty. I was now 90 and doubted I had the resources and will to go on without her. Emanuel — a physician and medical adviser to a president — saw no point in living beyond age 75. What reason did I have to leave my empty bed to go to other empty places? If there were reasons to live, I would have to reach deep within myself to find them.

The few reasons I did find seemed to have no purpose, certainly nothing important enough to live for. Yes, I speak every day with my children and each weekend with my grandchildren. But the emptiness within me left me with little to give them. I understood that if I found no reason to go on, the despair I felt could kill me. That would take time when every clock seemed stopped at midnight. But, unexpectedly, time’s slow crawl proved to be a blessing: it gave me hours to think of nothing but what made life worth living.

Gradually, in those midnight hours, flickers of light began piercing the darkness. A friend called and said “I don’t like the sound of your voice. I’m coming over. Meet me outside and let’s talk.” It was the first of the acts of kindness that carried with them a hint that I could heal.

A Buddhist friend urged me to talk with Muriel. “She’s not gone,” he said. “She’s in your being. Talk with her!” I was about to shrug off his advice but was in such pain I would try anything.

Understanding Life’s Purpose in My Nineties

Just thinking of Muriel began to fill the empty places within me. I called out to her, hoping she would hear my voice and that I would hear hers. Her first words sounded so like her. She told me it wasn’t what I lost that mattered. What mattered was what we had for all those years. Her words, as they always had, brought with them the gradual return of my courage.

I am certain I have found reason to press deeper into my nineties.

Now, three years since I lost Muriel, I realize what kept me from drowning in those dark waters. I was startled to find how unimportant many of my relationships and activities had been. If I were shaken awake in the middle of the night and asked what kept me alive, I could think of only two reasons. It was being surrounded by the love of my family and by acts of kindness from friends, sometimes from strangers. It was these that gave me the strength to go on, not dinners with people I barely knew.

I understood my life would have purpose only if I touched others with acts of kindness and brought love to every encounter with my family and close friends.

I need no reminder that I’m one of the “old-old.” The slightest graze leaves an angry welt; a scratch I barely feel bleeds through multiple band-aids.

But I am certain I have found reason to press deeper into my nineties. My children and grandchildren will have to climb their own mountains, but I believe they’ve seen that mountains can be climbed even when bearing the heaviest of burdens.

Perhaps that’s reason enough to be grateful I’ve remained alive in the years Dr. Emanuel has chosen to forego.

Complete Article HERE!

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

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

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

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

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

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

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

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

Imagine you have three months to live

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

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

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

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

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

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

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

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

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

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

Practice deep, active listening

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

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

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

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

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

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

Legacy projects in the here and now

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

Complete Article HERE!

One Good Thing

— A food memoir about love, grief, and lockdown

The Year of Miracles by Ella Risbridger.

In The Year of Miracles, Ella Risbridger cooks through the end of the world.

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British journalist Ella Risbridger’s new food memoir The Year of Miracles was not, she informs us in her first sentence, “meant to be” a book about grief. It was meant to be a cheerful little book about hosting dinner parties, a happy follow-up to Risbridger’s 2019 hit Midnight Chicken, about how she cooked as a way of dealing with her depression. “But what can you do?” Risbridger goes on. Grief “gets into everything.”

Part of the charm of Midnight Chicken was the way Risbridger conjured her lovely life onto the page: a life of quirky, cozy, bookish love with her partner the Tall Man (real name John Underwood) in their Tiny Flat. It was marred only by the tragedy tucked away on the back page in the acknowledgments: In the time between Risbridger handing in her manuscript and Midnight Chicken coming out, Underwood had died of a rare form of lymphoma at age 29. (Risbridger gives Underwood, along with the rest of her friends, a pseudonym in The Year of Miracles. Here, he becomes Jim.)

The Year of Miracles is Risbridger’s account of how she cooked her way through the ensuing grief. And because it is, ominously, set in 2020, she is grieving not just the loss of her partner, but also the loss of a whole way of pre-pandemic life.

“This is supposed to be the year when the world, my world, starts again;” Risbridger writes as she first hears news of the pandemic. “This is not the year the world is supposed to end, because my world has already ended.”

The world does not quite end, and Risbridger keeps cooking through it. She cooks Leftovers Pie for her new housemate, because she loves her; Crisis Cardamom Coffee Banana Bread, because everyone made banana bread at the start of lockdown; Turkish Eggs, because Jim would have hated them and he’s no longer there to object.

It’s this last question, of what to do now that Jim is no longer here to make his objections known, that leads Risbridger to some of her most affecting passages. She spent years of her life as Jim’s caretaker, guiding him through chemotherapy and all its accompanying horrors, rendered “subservient, essentially, in a way no other adult relationship demands.” Now that Jim is no longer there, she has space to think through her own preferences, and to deal with the guilt and the horror surrounding that space.

With her housemate, she invents “the Self-Esteem Finger: you hold up one finger, to indicate a desire that has no reference or recourse to anyone else, and you say ‘self-esteem!’” She stops making roast dinners, which Jim loved and she hated, and she indulges in meals with very little meat, such as the Turkish eggs in garlic yogurt.

A watercolor illustration shows a black-and-white cat walking below an outdoor metal staircase covered in flowerpots. In the background, a blooming cherry tree and a weeping willow stand against a blue sky while a yellow bird flies overhead. In the bottom right corner is printed the word “April.”
A chapter header from The Year of Miracles.

You can successfully cook from these recipes, more or less. The rice bowl with Vietnamese flavors Risbridger has dubbed Coconut Pow comes out bright and sharp and sweet, although its many parts make it fiddly to put together unless, like Risbridger, you are already in the habit of keeping quick-pickled radishes and salted mango in your fridge. When I followed her recipe for cardamom buns, I found that she’d left out a few details about how to construct them, so that I couldn’t seal them properly and the spiced butter filling leaked out of the buns as they baked. They were still absurdly delicious.

But the recipes here are more indicative of Risbridger’s personality than anything else. They are organized chronologically, with 12 chapters, one for each month of the year, and they are optimized specifically for the way she runs her personal kitchen. As such, she is always specifying the exact color and flakiness of the kind of sea salt you should use, but when a recipe calls for just plain table salt she tells you to pinch your flaky sea salt into dust, because she can never remember to keep plain table salt in stock.

>What you’re really reading for here is Risbridger’s sprightly, evocative prose, which is never more compelling than when she’s describing the sheer joy of her food. Roasted eggplants are “blistered and blackened and chewy and delectable;” fresh dukkah is “a beautiful sunset orange” that makes every salad “a riot;” soy-marinated eggs are “sticky” with “golden, liquid yolks.” Periodically, she peppers her instructions with bossy repetitions (“I do know your life, and you don’t need more flour”) and shameless confessions (“I have a weakness for adding leftover sour cream and chive dip, but I understand this is horrible”).

Bouncing up against Risbridger’s prose are Elisa Cunningham’s whimsical watercolor illustrations, which range in elaborateness from two-page-spread tableaux of the neighbor’s cat in Risbridger’s fire escape garden to half a lemon rolling around the bottom margin of a recipe for parsnip purée. They are sweetly messy sketches, matching the sweetly messy energy of this home cook’s recipe book.

And that, in the end, is what you read The Year of Miracles for: the sweetness and the mess. Cardamom buns that fall apart in the oven but are still buttery and rich with sugar and spices. An account of a life laced with grief that wasn’t supposed to be there, and a world that ends over and over and over again and manages to keep its beauty and its charm regardless.

It’s what makes this cookbook-cum-memoir feel exuberant, unstoppable, and triumphantly on the side of love and life in the face of death and loss and grief.

Complete Article HERE!