Month: August 2022

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Ask Me About Death and Dying

— On the Work of Palliative Care

Anna DeForest Wrestles With the Calculus of Whether a Life Is Worth Living

By Anna DeForestIt has never been obvious to me that life is worth living. Throughout my medical training, where we have ample exposure to the tools of psychiatry, the taxonomy, I have considered that this disposition may be an illness, a disorder of mood or personality, or a maladaptation secondary to the traumas of my upbringing. But try as I might I cannot seem to be otherwise.

For almost a decade now my life has been in medical training, which is schooling that is also labor, for five years paid but the first four I paid for, and part of what they train us to do at these elite institutions is to be leaders in whatever fields we go into. We are made to practice giving academic talks, and whenever it is my turn, almost without meaning to I start talking about Rene Descartes, about thinking in relationship to being, about how wrong he was and how fucked up the world got, or I’ll talk about neuroscience and free will and confabulation, and I wonder if people with psychiatric illness feel the way I feel when I give these talks, the comforting grip of an ultimately ineffable concern.

The title of the training I have just wrapped up is Hospice and Palliative Medicine. Hospice means a roadside inn for pilgrims and indigent travelers. Palliative means more concerned with the experience than the reason it happened to occur. It is very important to the people who advocate for the field of palliative medicine, for its funding, legitimacy and worldwide integration into medical practice, that we always stress at every public opportunity that palliative care is for the living. Of course we are all of us dying, but their concern is worth a note. Because doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.

On the spectrum of death, unless you are to die instantly, in your sleep, say, or as my father did recently, in a chair in front of the television, so suddenly you do not even have time to rise, to try to get to a phone, so shocking and abrupt it can hardly register for you, the participant, the decedent, as having any quality, a good death requires a little bit of time—to rest, to reflect, to say the four things they say it helps to say: I am sorry, I forgive you, and the other two I forget. Hospice, though etymologically a place, is in modern usage a philosophy of care you can receive in your home or a nursing home or a hospital or anywhere, a team of nurses, doctors, social workers, chaplains and others who help you navigate the process of becoming dead.

Once on hospice, you stop receiving treatments that slow down the dying process and your care is focused on medications, practices and routines that can make your experience at the end of life less unpleasant. Palliative care, distinct from hospice, is a broader concern for anyone in a body enduring illness, a team performing symptom-focused assessments on anyone whose health is at times at odds with their quality of life.

Doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.The first person I ever saw die, and the second, and the third, were people in late age, their seventies or eighties, who died of cardiac arrests in the hospital. It goes like this: A call goes out overhead and a team comes at a run through the halls of the hospital, to where whoever found the patient pulseless is already over them, performing chest compressions. The body is stripped, legs and arms each a separate place, a project, someone placing a new line or stabbing for an arterial blood gas. The air fills with a tension you could tell yourself is excitement, although in tenor it is more like watching someone being arrested, surrounded, attacked. Every action argues for itself, right on the line of brutality.

Even before I saw all this, I often feared my heart would stop, mostly when it was night and I could not sleep. I would listen to my heart beat and beat, willing another, on and on and on. One of the unit physicians, when he learned I was not even enrolled yet, still in my first line of work, adjuncting in an English department, begged me to stay where I was. This job, he said, it eats your whole life, it is terrible. I can only guess what he meant, that his hours were long and his life and work not clearly delineated, that whatever he had imagined that his life would be like here, he had been wrong. The patients with heart failure were unfixable, noncompliant, always coming back.

Years later, I had finished medical school and was resident, training as a specialist in disorders of the brain. The patient was well-appearing, able-bodied, mid-fifties, a construction worker presenting with a few weeks of dizziness. An MRI showed small bright lesions all over his brain, a shower of metastasis. The word innumerable is never one you want to hear from a doctor. A pan CT showed the likely source of the mets, a large chest mass concerning for lung cancer. He had no idea, no other symptoms, just a little lightness in the head.

What does this mean, he asked, and his doctor, the attending physician who was my boss, told him he would have to wait, to see a number of specialists: the interventional radiologist, who would biopsy the lung mass; the medical oncologist, who would match the tissue sample to a course of chemotherapy; the surgeon, who would tell him his tumors are inoperable; the radiation oncologist, who would blitz his brain and chest with radiation.

He waited for days in bed as we coordinated the other doctors. The teams came and went, each saying its piece, in long speeches of words that made sense one by one but kept not adding up to anything. I had been taught not to tell him much, and it was true, we wouldn’t know the whole picture until after the biopsy, until the tissue was sent for tumor markers, and the treatment course sketched out. What I wonder, he said to me one afternoon when I was at the bedside, is why no one will just tell me that this is really bad.

One reason he never quit smoking was he was afraid of gaining weight. He didn’t want to get diabetes, which is the disease that killed his father around his same age. On the bloodwork we sent before his scans came back we found out that he had diabetes anyway. When I told him this, he laughed, and we shared the cannoli his wife brought in from their favorite Italian bakery. It is bad, I told him. It is really bad. He died, he did, a few months later.

As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without.There is a stance that appears most in medical-school application essays that the purpose of medicine is to relieve human suffering, but it is truer to say, in Western medicine, that the goal is the prolongation of life. Nothing wrong with that, on its face, in some cases, though it may be reasonable to wonder, since everyone dies, what is the cumulative effect on medical practitioners, our hearts and heads, that we miss our goal in every case; a failure rate of one hundred percent.

But for you, for now, you have high blood pressure, high cholesterol, so take this pill to bring it down so that it doesn’t give you a stroke or kill you. If the cost is low and the benefit is high, the choice is clear, but in chronic illness and in life-limiting illness we find a need to add a little background math: this treatment, say it is whole-brain radiation, will prolong your life, and the cost of that prolongation is, say, aging your brain by forty years. This treatment, a percutaneous endogastric tube, will prolong your life but you will never be able to eat food by mouth again. As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without. And this is the work that palliative care is about.

What is it, exactly, that you want me to do? The woman who was asking had metastatic cancer in her abdomen. Yesterday we told her that she had no options  left for treatment. With her permission we shared a prognosis of weeks to a few months. Her face didn’t move as the news broke. She looked off to the left at the wall. And someone gave the speech on the philosophy of hospice, and she shared a hope to go home. It is the next day, with the logistics all already in process, that she asks.

What am I supposed to say now, what am I supposed to be thinking about? I can’t tell you how everyone I meet feels about the things we tell them, though young in this work I have seen a few trends. And something I see a lot is people who feel that their lives got away from them, they were always just watching, as from the station looking at faces flicking by on a moving train, and what is left to them now in the time they have left is only fear and suffering of unclear significance. What do I do with a thing like that? I hear it, and I help where I can.

What I am always saying in my Descartes speech is that we are not what we think, but we become what we are doing. I am worried about what this means for the doctors. Whenever I am lost, I try to stop moving, in case I am running off again in the wrong direction. It is never too soon to sit down and map out our values, to consider if we want to end up in the place where we are going. No, not yet, we aren’t there yet, says the oncologist. This is just a bump in the road.

________________________________________

A History of Present Illness by Anna DeForest is available now via Little, Brown.

Complete Article ↪HERE↩!

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‘I’m a Death Doula and This Is the Top Way Most People Prefer to Be Comforted at End of Life’

By Jessica Estrada

Death doulas or end-of-life doulas, if you’re not familiar, are trained professionals who help people who are dying and their loved ones. These doulas provide emotional and practical support such as sitting vigil, helping plan funeral and memorial services, communicating with the medical support team, and assisting families with processing grief. Ensuring the person nearing the end of their life is comfortable is another big element of the job. While every death and situation is different, there are many practices and rituals that death doulas do—and teach and encourage the person’s loved ones to do—to bring comfort to the dying.

Below, Ashley Johnson, the founder of Loyal Hands, a team of millennial death doulas, shares five rituals, including the top way most people prefer to be comforted at the end of their life. Interestingly, many of these practices are universally comforting, even for those who are not actively dying, and can be incorporated now to help cultivate comfort in your everyday life.

Create a comforting ambiance

Setting the mood and creating a comfortable ambiance is important. Many people prefer to die at home, Johnson says, but wherever they may be, there are things you can do to make the environment as comfortable, familiar, and soothing as possible for them. To do this, she suggests asking the person what their ideal last day would consist of. Some ideas she recommends include playing their favorite music, having soft lighting, filling the room with soothing scents, and having their pets around.

Rub their feet or hands

Rubbing a person’s hands and feet can also provide comfort. “The last senses to go are usually touch, followed by hearing,” Johnson says. “Gently rubbing hands and feet will help the family and the dying process the labor of death. The comfort of massage helps relax tense moments. That sense of touch reminds the dying that they are loved and not alone.”

Sit vigil

Sitting vigil with someone nearing the end of their life also provides great comfort. Johnson says this involves sitting bedside with them, actively listening, and ensuring they are as comfortable as possible during their final hours. Sitting vigil also includes relaying any sign of pain to the hospice team.

Perform deathbed rituals

Deathbed rituals are a way to honor the dying person and their loved ones, Johnson says. Rituals can be done before, during, or after death and can be religious, cultural, or simply personal things the person finds comforting. For instance, Johnson recalls one client requesting that his family wash his body with warm water and lavender.

Shift their perspective on death

Death doulas also support the dying and their loved ones to adopt a death-positive mindset. They do this by having conversations about death, dying, and grief and encouraging them to view death as a normal part of life that everyone experiences. That can help reduce fears and anxiety around death.

Share and preserve memories

Another way death doulas help grieving families is by encouraging them to share memories and stories about their loved one. “This can help provide the family with a sense of purpose and also help significantly with coping and healing,” she says. You can get as creative as you’d like with this. Some ideas Johnson shares include capturing voice memos and videos, creating a family cookbook, planting trees in their honor, stitching a memory blanket together, donating to a charity they support, and keeping trinkets and mementos around that remind you of them.

Help get their affairs in order

According to Johnson, the top thing that makes people nearing the end of their life feel the most comforted is ensuring that their affairs are in order before they pass. Not only will this cause less stress to their loved ones, it also helps them achieve a sense of completion and peace before they pass.

“While legal documents are important, complete end-of-life care also includes helping the dying person spiritually, mentally, and emotionally in alignment as well,” Johnson says. “People ideally would like to transition with a sense of completion, a sense of satisfying their purpose here [in] this realm.” Examples of things that can provide that sense of fulfillment include extending forgiveness or requesting forgiveness from others, releasing things beyond their control, and addressing any fears or concerns around death.

Complete Article ↪HERE↩!

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How to Write an Obituary

A Guide to Crafting a Meaningful Memorial

By Angela Morrow, RN

When you write an obituary, it’s so that you can announce the news that a loved one has died. Family, friends, former colleagues, and the community will want to know details about the viewing, memorial service, or funeral, and any plans for a burial.

You also may wish to add a summary that personalizes the life and legacy of your loved one, and acknowledges the surviving family members. In some cases, a cause of death and preference for any donations to a health-related or community organization may be included.

This article offers ideas on how to honor a loved one or even write an obituary for yourself ahead of time. Even if you’ve never written an “obit” before, you’ll learn how by following a step-by-step approach.

Planning the Obituary

As you plan your loved one’s obituary (or your own), first check with the funeral home or similar service that’s handling end-of-life arrangements.

These agencies will often help people who need to write an obituary. They may have a guide for obituary writing that’s part of a planning overview. They also may have an online platform where you can place a digital obituary, and invite people to share memories, images, and video.

Some are free, so check with the service provider. With newspapers, call ahead to check on the rates. Expect a charge of $200 to $500 for a “short” obit (often up to 300 words) and up to $1,000 for a “long” one with a photo.

That way, you’ll know how to plan the length of the obituary ahead of time, or make adjustments that align with your loved one’s and family wishes in the space that you’ll have.1

Writing an Obituary, Step by Step

First, you’ll want to collect the information you need. You also can decide on a family member or friend who will help in the process of writing an obituary.

It may help to ask people who knew your loved one from teams, clubs, or faith-based and community groups to contribute information, alongside those who may have worked with them.

Select your preferred tool, whether you’re writing with pen and paper or on a computer. Many people will want to use a template for an obituary that’s easy to use in digital form, but you can follow this step-by-step approach on paper too.

Basic Obituary Facts

An obituary needs to include key details about your loved one. These basic facts include:

  • The full name of the deceased
  • Their age
  • Where the deceased lived
  • Their date and place of birth
  • The date and place of death
  • The date and cause of death (which the family may wish to withhold)

You’ll start with a basic announcement of the death that clearly states your loved one (name, age, hometown) died. You might add that the death was suddenly, or expected after a long illness, with the time and place of death.

The place can be specific or, if you prefer, you might simply say they were surrounded by family.

Summary of Life

When writing an obituary, you’ll want to include a brief summary of the deceased’s life. This is a way to honor them and the meaning their life held, but also to help other people remember them.

You can be straightforward, moving from one fact to another. You can be more heartfelt, or even humorous. You also may already know what your loved one wanted to include and plan to stay faithful to their ideas.

There really is no “right way” to write an obituary. But most obituaries will next include the person’s birth information, including the place and their parents. It’s common to include their job and career information, if it applies. You may want to add any educational achievements.

A detail or two about their community activities, favorite hobbies, or their faith-community membership would be included here, too. Choose the things that reflect the identity of your loved one and how their life was shared with family and friends.

It’s better to gather “too much” information early on. You can always edit and/or shorten your obituary later.

Family Names in an Obituary

An obituary also focuses on family, both those who died before your loved one and the survivors who are honoring your loss. So you’ll include both living and deceased family members.

If you’ve included the full names of the deceased’s parents earlier, you don’t need to repeat them here. What you’ll want to do is describe the family members in order of the closest relationships.

A spouse or partner, and any children, are typically listed first. The spouses or partners of children also are listed but set off with parenthesis so that it looks like Child (Partner’s First Name). Then siblings, also listed with their partners if preferred

Any grandparents, aunts, uncles, step-family members, or cherished and special friends should be included. Be sure to write the total number of grandchildren or great-grandchildren, even if you do list them by name.

It’s not unusual for people who died before your loved one to be listed separately. A “preceding them in death” paragraph can include those who have not already been mentioned.

Funeral or Memorial Details

An obituary is meant to share details about any funeral and memorial services. If you plan to invite the public, be clear that this is the case. If your ceremony is private, be clear about that, too.

For a public memorial, simply invite “family and friends” to the service. When you write the obituary, make sure people have information that includes:

  • Time
  • Day
  • Date
  • Place
  • Location

Be sure to include any other information that may be helpful to those attending the service. That includes the name of the funeral home, and any memorial website to honor your loved one’s life.

Donations

It’s common to ask people who might otherwise have sent flowers or a gift to make a donation instead. There’s a good chance that your loved one may have already told you their wishes about donations to a charity or memorial fund.

If not, then the choice is up to the family. Just be sure to name the charity or memorial fund to which donations should be sent. An address helps, too.

Checking the Facts

Obituaries are more than a matter of public record. They can become lifelong keepsakes for the people left behind. You’ll want to be sure it’s right, both now and in the future.

You can work with another family member or a friend to proofread your obituary writing and make sure all the facts are correct and that no one was missed in the family list.

Be sure that the spellings of names and places are right. That’s especially important if titles like “Dr.” or abbreviations like “Jr.” are needed to differentiate between people.< Sometimes, the ears are better than the eyes when it comes to improving the tone of a story. So, always give it one last read aloud, so that you can "hear" the tone, the facts, and any changes you'll want to make before publishing it.

Proofreading Tip

Edit the obit first, then proofread it. Editing involves revising, reorganizing, and rewriting sentences for clarity. Proofreading is checking details like spelling and punctuation. You’re bound to catch more when you focus on one task at a time.

Summary

Structuring an obituary is largely a matter of choice; no two are alike. But readers expect to learn some generic information about the deceased, including basic facts, a life summary, list of relatives, and details about the final service.

Before you get too carried away with writing, check current rates that newspaper and online platforms charge to run an obit. The difference in price may influence your preferred word count.

Frequently Asked Questions

  • What should be included in an obituary?

    • An obituary should be informative. Be sure to include:

    • The full name of the deceased, including nicknames
    • The age of the deceased at the time of death
    • The city or town of residence at the time of death
    • A list of immediate surviving family members
    • A brief summary of the deceased’s life
    • Memorial or funeral details with the address and date
    • Details about charities or memorial funds to send a donation
  • Should the cause of death be in a obituary?
    Check with the deceased’s spouse or family members before publishing the cause of death. In some cases, the family may prefer to keep this detail private. In such cases, you can use a euphemism like “passed after a long illness” or “passed suddenly.” Or you can sidestep the subject entirely and not mention it at all.
  • What should be excluded from an obituary?
    Obituaries should not be written in the first person. This means you should not use the word “I”. Remember that an obituary is not a personal tribute. You should also exclude personal addresses and phone numbers.

    Complete Article ↪HERE↩!

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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
*

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?

*

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.

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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.

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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.

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

by University of Sussex

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.

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