Category: Preparing for Death

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Embracing life’s purpose in the face of inevitable death

“I cannot escape death, but at least I can escape the fear of it.”
– Epictetus

By Michael Brant-Zawadzki, MD

I wish more people knew that quote during the pandemic. I write this on November 1st, celebrated as Dia de Muertos or “Day of the Dead.” Epictetus and the other Stoics knew that death is inevitable, that life can change in an instant, and viewed it as a reminder to live each day purposefully and virtuously. In a world where meaningless death is a daily fact, only the individual can define meaning in their own lives.

This introduction is not meant to be morose but rather meant to explore the dilemmas in health care at the end of life. One of my colleagues took a phone call that I overheard. It was from the nursing home where his 88-year-old demented mother was housed, calling to say they were taking her to the emergency room due to a change in mental status. “Stop,” he shouted. “My mother has a do not resuscitate health care directive.” The conversation became an argument between the facility’s risk-averse nurse manager and him. The paramedics arrived, the nursing home protocol directed them to take her to the ER, and that was that. The ER soon called; my colleague’s mother was in septic shock, in renal failure due to a kidney infection, and they were starting her on IV antibiotics, and planning dialysis. The doctors were following their script, one based on best evidence-based care. The son anguished in his reminding them of his mom’s end-of-life directive, particularly because his sister, now in the loop, wanted to do “everything we can” if death was not a certainty.

But it is, as reluctant as we all are to acknowledge. Most frontline doctors won’t argue with a family member who reverses the directive in a moment of grief, panic, or guilt. Given their training, these acute care specialists are not willing participants in a “death panel.” The doctors’ skill set and enthusiasm also influence the approach. Highly skilled physicians – expertly trained and confident in their technical talents – are enthusiastic and passionate about what they do and want to do it. This is why advanced hospitals, like ours, have a palliative care team led by a physician, a trained social worker, with an ethics panel to help families and doctors in the throes of such life-wrenching decisions.

Economics plays a role. The amount of health care dollars spent in the U.S., 4.3 trillion dollars or 19 percet of GDP, includes 1.2 trillion spent in the last months of life. That 1.2 trillion is over four times as much as England spends for all health care annually (on a per-patient basis, England spends less than half as much as the US). In England, many procedures, including dialysis, are restricted by the National Health Service, based on utilitarian principles that consider quality of life versus cost. In the US, a fee-for-service payment system financially rewards physicians for each procedure: Hospitals are paid a per diem fee based on the admission diagnosis. This “per click” payment model influences decisions by both parties, consciously or not. Yet many providers and most families do not consider health care expenses when the moment comes to do “everything we can” in the last stages of life. Switching an in-patient to hospice care can improve a hospital’s “pay for performance” mortality scorecard.

The American College of Physicians previously issued guidelines that emphasize each physician’s duty to provide “parsimonious care”; that is, to “practice effective and efficient health care, and to use health care resources responsibly.” Their president at the time stated: “We also have to realize that [we must think] about how resources are used in an overall sense [or] there won’t be enough health care dollars for our individual patients. So while concentrating on our individual patients and what they need, we also need to think on this bigger level both for their benefit and for the well-being of the community at large.” My italicized emphasis brings to mind F. Scott Fitzgerald’s oft-quoted definition of a first-rate intelligence: The ability to hold two opposed ideas in the mind at the same time and still retain the ability to function.

Death is not an entity but a rumination: a tornado of thoughts, fears, visions, and emotions. Only humans see what can and – in the case of death – will be. Not all embrace the introduction, yet it is that sad certainty that introduces order, purpose, and increasing urgency into the human contract. The intensity of a loved one’s passing, or a pandemic, brings it to the forefront of the mind.

Or, as Camus put it in his famous book The Plague: “Plagues are infrequent but constant and they do not alter the conditions of mankind (everybody dies) but rather concentrate our misfortunes into moments where everyone thinks for a change that mortality is afoot.” The Stoics remind us daily that “mortality is afoot” to start each morning with a renewed passion for life.

Complete Article ↪HERE↩!

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It’s good to remember

— We are all on borrowed time

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Getting older is almost like changing species, from cute middle-aged, white-tailed deer, to yak. We are both grass eaters, but that’s about the only similarity. At the Safeway sushi bar during lunchtime, I look at the teenage girls in their crop tops with their stupid flat tummies and I feel bad about what lies beneath my big, forgiving shirts but — and this is one of the blessings of aging — not for long. Aging has brought a modicum of self-compassion, and acceptance of what my husband and I call “the Sitch”: the bodily and cognitive decline that we all face sooner or later. Still, at Safeway, I can’t help but avert my eyes. Why push my luck?

Twenty years ago, when I turned 50, I showed the dark age spots on my arms and the backs of my hands to my wonderful dermatologist.

“They used to call these liver spots,” I said, laughing.

There was silence. “They still call them liver spots,” he replied.

My mother died of Alzheimer’s disease when I was 50; my father had died of brain cancer 25 years before, so I have always been a bit more tense than the average bear about increasing holes in my memory, and more egregious moments of dither. I thought of my 50s as late middle age.

At 60, I tried to get this same dermatologist to authorize surgery to remove the pile of skin of my upper eyelid that gathered like a broken Roman shade at the eyelash line. “Look,” I said, “the eyelid has consumed my eyeball. I will not be able to see soon.”

I pulled out an inch of skin to demonstrate my infirmity.

He pulled out three inches of his own. “Ticktock,” he said. And he was right. All things skin had gone to hell, from the crepe of my forearms to lots of new precancerous lesions that he routinely froze off or biopsied, once making me use a horrible burning cream all over my face that turned me into Peeling Tomato Girl.

So many indignities are involved in aging, and yet so many graces, too. The perfectionism that had run me ragged and has kept me scared and wired my whole life has abated. The idea of perfectionism at 60 is comical when, like me, you’ve worn non-matching black flats out on stage. In my experience, most of us age away from brain and ambition toward heart and soul, and we bathe in relief that things are not worse. When I was younger, I was fixated on looking good and impressing people and being so big in the world. By 60, I didn’t care nearly as much what people thought of me, mostly.

And anyway, you know by 60 that people are rarely thinking of you. They are thinking about their own finances, family problems and upper arms.

I have no idea of the process that released some of that clench and self-consciousness, except that by a certain age some people beloved to me had died. And then you seriously get real about how short and precious life is. You have bigger fish to fry than your saggy butt. Also, what more can you lose, and what more can people do to you that age has not already done? You thought you could physically do this or that — i.e., lift the dog into the back seat — but two weeks later your back is still complaining. You thought that your mind was thrilling to others, but it turns out that not everyone noticed, and now they’re just worried because your shoes don’t match.

Anyway, as my dermatologist hinted, the tock did tick, and one day he was gone. He retired. Then last year, I heard he died.

>Which brings us to death, deathly old death. At a few months shy of 70, with eyeballs squinting through the folds, I now face the possibility that I might die someday. My dad said after his cancer diagnosis that we are all on borrowed time, and it is good to be reminded of this now and again. It’s a great line, and the third-most-popular conversation we oldies have with each other, after the decline of our bodies and the latest senior moments: how many memorial services we go to these days.

Some weeks, it feels as though there is a sniper in the trees, picking off people we have loved for years. It breaks your heart, but as Carly Simon sang, there is more room in a broken heart. My heart is the roomiest it has ever been.

I do live in my heart more, which is hard in its own ways, but the blessing is that the yammer in my head is quieter, the endless questioning: What am I supposed to be doing? Is this the right thing? What do you think of that? What does he think of that?

My parents and the culture told me that I would be happier if I did a certain thing, or stopped doing that, or tried harder and did better. But as my great friend Father Terry Richey said, it’s not about trying harder; it’s about resisting less. This is right up aging’s alley. Some days are sweet, some are just too long.

A lot of us thought when we were younger that we might want to stretch ourselves into other areas, master new realms. Now, I know better. I’m happy with the little nesty areas that are mine. For some reason, I love my softer, welcoming tummy. I laugh gently more often at darling confused me’s spaced-outed ness, although I’m often glad no one was around to witness my lapses.

Especially my son, who frequently and jovially brings up APlaceForMom.com. He’ll say, “I found you a really nice place nearby, where they’ll let you have a little dog!” Recently, I was graciously driving him and his teenage son somewhere and made a tiny driving mistake hardly worth mentioning — I did not hit anyone, nor did I leave the filling station with the nozzle still in the gas tank — and he said to his boy just loud enough so that I could hear, “I’m glad we live so close to town, so it won’t be as hard for her when we have to take away her keys.”

I roared with laughter, and with love, and with an ache in my heart for something I can’t name.

Complete Article ↪HERE↩!

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Four Things You Don’t Know about Death

By Ryvyn

As a Death Doula for a law firm, I have had the experience of attending many different deaths. Some deaths are attended by families, who stand at the bedside in stunned and awkward silence, waiting for the inevitable; while some families talk about trivial events, like politics, football, argue, or start discussing probate matters over the dying individual.

Some of our clients have come into my care after they have already become incapacitated. Because they have no family willing or able to serve as their healthcare agent, they find themselves alone and I have no way to converse with them about their final wishes.
In rare cases, I have been hired by thoughtful individuals who are aware of the need for a death advocate throughout the active dying process. A Death Doula is an advocate for the dying individual and the family to help facilitate and process what is occurring.

Most everyone has experienced a funeral, but not everyone has attended a death. Thus most experience comes by viewing the dying process from the living perspective. I want to share several aspects of death and dying that may not be expected.

  1. You may not know death is imminent. I recently had an unusual experience where my client was in full organ failure and was being kept alive by medical intervention. In reality, there was no way they could save his body but he was mentally 90% clear when he was able to be awake. I had worked for this veteran for the last five years as we had begun planning for his inevitable demise and continued support of his wife.
  2. The doctor may not explain, in direct, plain terms when death will happen. Granted, the doctor may explain the “likelihood” that death could occur, but one cannot 100% predict the outcome or the time frame in which these things occur. Many people don’t have the bandwidth at this emotional time to read between the lines to figure out what is being said. If you are lucky you may have a Death Doula or family member who is willing to spell out the actual possible outcomes. In one case, I had to inform my client he was dying even though he wasn’t aware of the severity of the situation and didn’t want to die. I needed my client to verify that his wishes, which we had spent years discussing, were still to be enacted.
  3. As you pass you might not have the ability to communicate clearly. While your brain may be clear your body may not be able to communicate effectively. Or, it may be that you speak and move effectively but your brain is being affected to such a degree that its information is not reality. In both cases estate planning documents and an agent capable of carrying out your wishes can be extremely valuable.
  4. A dying person wants to be gently touched. While this may not be true in every case, in my experiences with the elderly or people passing with chronic illnesses, it is true. Skin-to-skin interaction is psychologically, emotionally, and physically supportive in all ages. If you are not the hugging type there are many things you can do that can provide comfort and support. Consider that the dying is possibly unable to communicate what is uncomfortable for them but also may be physically sensitive. I suggest gently washing their feet, arms, and hands, lightly applying lotion, brushing their hair, light massage through the sheet, holding their hand or gently massaging their head/shoulders. Lightly rubbing the back, anything you do should be for short periods. I deeply recommend touch interaction. There is nothing more intimate than the emotional transference between the dying and the doula as being able to provide some support and deep acceptance of being touchable (and therefore loveable) even at death.
What are your cultural, religious or family death traditions?
What are your cultural, religious or family death traditions?

No matter how much we prepare or plan, a natural death is likely a messy, spontaneous experience with unexpected situations and unalterable results. Nature is like that. Everything in this world dies in its way. Not only do plants, animals, and people come to an end but so do stories, relationships, seasons, actions, ideas, beliefs, dreams, illness, pain, growth, even weather, and environments.

Birth and death are the bookends of life. You had no control over your birth experience and yet, while we can prepare ourselves and our families and friends for death on financial, spiritual, and emotional levels, most are not interested in developing that practice. Conversations and exploration into your death culture and burial options help bring the foggy unknown into clear hopes and wishes that you and your family/community can enact.

Complete Article ↪HERE↩!

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7 ways to support a loved one with terminal cancer

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’

BY Gina Van Thomme

It can be challenging to find the best ways to support a friend or family member with terminal cancer — that is, cancer that can’t be cured or has stopped responding to treatment.

You want to support your loved one, but not overwhelm them. You want to be there for them, but also give them space. You want to say the right thing, but perhaps have no idea what that is.

To help, we asked senior social work counselor Malory Lee for advice on supporting a loved one with terminal cancer.

Be present, even if you don’t know what to say

It can be hard to find the right words to say to a loved one with terminal cancer. But often, showing up with a listening ear is far more important than knowing exactly what to say.

“We don’t have to have an answer. We don’t have to even know what to say all the time. And we don’t have to be worried about saying the right thing all the time. I think most important is just being there,” Lee says.

Don’t be afraid of silence, either. Lee says resisting the urge to fill silence can give both you and your loved one the time and space to understand and process what you are going through.

Allow yourself to feel complex emotions

A terminal cancer diagnosis can understandably bring a variety of emotions. These might include sadness, fear, anxiety, anger, shock, hopelessness and existential dread. Lee says all of these emotions are perfectly normal.

Another common emotion is anticipatory grief, which Lee describes as grief for an expected death that hasn’t happened yet. 

“A lot of the time, it’s really the exact same experience as grief. It can feel the same and be just as intense as the grief we experience after a death,” she says.

Although these emotions can be uncomfortable, Lee notes it is important for those with cancer and their loved ones to feel them rather than ignore them.

While navigating emotions surrounding a terminal cancer diagnosis, Lee encourages caregivers to be aware of persistent hopelessness or suicidal thoughts which may point to depression. If you or a loved one is experiencing depression, reach out to a doctor or counselor for support.

“Going through grief and dealing with terminal cancer does not mean we have to feel depressed,” she says.

Avoid statements that compare or minimize someone’s cancer experience

Lee suggests avoiding excessive positivity or statements that start with ‘at least’ when discussing terminal cancer. While phrases such as “At least you had this time to prepare” or “At least you have time to spend with loved ones” may have good intent, Lee says they can minimize the pain someone with terminal cancer is experiencing. 

Similarly, approaching a loved one’s terminal diagnosis with too much optimism and positivity can have the opposite effect.

“It may discount a real emotion that someone is feeling and might make them feel like they can’t share what they’re actually going through,” Lee says.

While it can be tempting to share stories and reassurance, Lee also recommends avoiding comparison.

“Every person’s cancer story is so unique; you could even be dealing with the same cancer as someone else and just have a very different experience,” she says. “Listen to the person in front of you, listen to their experience, ask questions about what they’re going through rather than trying to bring in your experiences.”

And what if you do say the wrong thing? Simply acknowledge it, apologize and move on.

Help without being asked

“Let me know if you need anything” can sound like a helpful way to support someone with cancer, but it can also create work.

“It puts the burden back on the person with cancer to determine what they need or ask for help,” Lee says.

While being mindful of your loved one’s wishes and boundaries, consider little ways to help. Lee says this might look like dropping off dinner, helping with cleaning or errands or delivering groceries.

“If you feel there’s something you can do to make things easier, go ahead and do it,” she says.

If you’ve learned that a friend or acquaintance you haven’t spoken to in a while has terminal cancer, you might be wondering whether it is OK to reach out.

“As long as you show genuine care and concern, and again, respect their wishes, I think that’s fine, and can often be very much appreciated,” Lee says.

Keep including them

It might feel like cancer changes everything, but it doesn’t need to alter the way you spend time with a loved one.

“Don’t assume that someone with terminal cancer doesn’t want to do something or won’t be willing or able to join a gathering,” Lee says.

Lee notes that cancer can feel very isolating and, while many times patients are met with lots of support right after their cancer diagnosis, that support may dwindle over time. She encourages loved ones to keep reaching out to a friend or family member with cancer, even if it means finding new ways to accommodate physical limitations.

This might look like playing games together online, gathering closer to a loved one’s home or simply continuing to extend invitations even if your loved one has had to miss events in the past.

Don’t be afraid to talk about difficult topics

Cancer can feel like the elephant in the room, but loved ones don’t need to pretend it doesn’t exist.

Instead, Lee says to let your loved one take the lead in determining what topics are off-limits.

“If a person is uncomfortable sharing or talking about certain things, or if they don’t want to, respect their wishes,” she says.

But if someone with terminal cancer is open to discussing a range of topics, it is OK to ask about health or even end-of-life plans. Lee says having these conversations, while difficult, can ensure you are accommodating a loved one’s wants and needs.

“It’s very critical to make sure we are honoring those wishes. And we can’t honor those wishes unless we know what they are,” she says. 

Remember to take care of yourself

Lee recommends caregivers find a support system outside of the loved one they are caring for so they can process their emotions. She also encourages caregivers to take small breaks, even if they are only mental rather than physical.

“There’s no need to feel guilty to take time away to do something that’s truly for you,” she says.

Caregivers can find self-care resources and community by joining MD Anderson support groups or connecting with someone else who’s been there through myCancerConnection, our one-on-one cancer support community.

Finally, Lee says that it is possible – and healthy – to experience happiness during a difficult experience.

“Sometimes we think when we’re grieving or when we’re caring for a loved one who is ill, we have to be sad all the time, and that’s just not true,” Lee says. “In a healthy grief experience, we do experience the full range of emotions, and our feelings often come like waves. It’s perfectly healthy and normal to feel joy and happiness also while we’re grieving.”

Complete Article ↪HERE↩!

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6 Uncomfortable But Necessary Questions To Ask Your Older Parents

— It may never feel like the “right” time to have these conversations, but experts say you shouldn’t hold off.

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Talking to your parents about their end-of-life wishes may feel like an uncomfortable or morbid topic to bring up, and one that’s tempting to avoid altogether. But you don’t want to wait until your parents are in the midst of a health crisis to have these discussions when stress levels are high and they may have trouble communicating their wishes.

According to The National Hospice Foundation, talking about end-of-life wishes preemptively “greatly reduces the stress of making decisions about end-of-life care under duress. By preparing in advance, you can avoid some of the uncertainty and anxiety associated with not knowing what your loved ones want. Instead, you can make an educated decision that includes the advice and input of loved ones.”

We asked end-of-life experts to share some of the uncomfortable but important questions to ask your parents. Below, they also offer advice on how to approach these daunting conversations.

1. Do you have an up-to-date advance care directive?

Advanced directives include legal documents such as a living will and medical power of attorney. A living will explains what health care treatment a person would — and would not — like to receive near the end of life, or if they are otherwise unable to speak for themselves. A medical power of attorney — sometimes referred to as a durable power of attorney for health care — is a document naming the person who will be responsible for making medical decisions if the patient cannot. It’s important that your parents not only put these preferences in writing, but also talk through them with you so you can properly honor their wishes.

Only one-third of Americans have advanced care directives in place, “leaving family members often struggling to determine what their parent’s wishes are or making choices that they may not have made for themselves,” Loren Talbot, director of communications for the International End-Of-Life Doula Association (INELDA), told HuffPost. “There are resources that are culturally competent and multi-language guides to help walk your folks through the process. Make sure you review by the state you live in.”

To get started, Talbot recommended resources such as The Conversation Project, Five Wishes and My Directives.

Dr. VJ Periyakoil is a palliative care doctor, as well as the founder and director of the Stanford Letter Project, a tool that helps people plan for their future including end-of-life medical care, using different letter templates.

For example, their “What Matters Most” template “helps a person write a letter to their doctor and health care team about their goals of care and their values,” Periyakoil told HuffPost. “Family members can use our letter template to have a gentle conversation with their parents and help them complete their letter advance directive to their doctor.”

It includes prompts about how medical decisions are made in the family, how bad news is handled, whether they’d want to be put on a ventilator (breathing machine) or sedated if they were in extreme pain.

“The goal of this conversation is to ensure that our parents have a voice in their care and give them ample opportunity to provide us with anticipatory guidance,” Periyakoil told HuffPost.

2. Have you thought about what you want the end of your life to look like? If so, can you share what you’re envisioning?

Some folks have a clear picture of what they want theirs to look like; others may avoid such thoughts, Talbot said. This question will help you understand their desires so you know how to best support them when this time comes.

“Just let them talk at that moment and listen. Some possible follow-up could be: Do you know where you want to be — home or care facility? What would the room look like? Does it have pictures of their loved ones pinned up or specific music playing as they are actively dying?” she said.

“Some of the same choices we make during life, we can plan for at death. Do you want to have any rituals or customs take place prior to death? There are so many questions that can be shared to help people really define their needs. End-of-life doulas are trained in asking these questions, and can support individuals and their families to create a plan.”

“The time to broach the conversation is now. It doesn’t serve you or your loved one if you continue to avoid it or ignore the reality of death.”
– Aditi Sethi, hospice physician and end-of-life doula

To help guide these conversations, Talbot recommended resources such as The Death Deck, Death Over Dinner, GoWish Cards, or connecting with an end-of-life doula via the INELDA Directory.

You might also ask about how flexible your parent is about potential living arrangements in the event that their caregiving needs increase, said hospice physician and end-of-life doula Aditi Sethi.

For example: “Would you move into our home with our three kids so we could take care of you? Or could we move in with you?” Sethi, who is also the executive director of Center for Conscious Living and Dying, told HuffPost.

“There is fear amongst some parents that their children are too busy to care for them or incapable for various reasons. With our caregiver crisis, aging population, undesirable options for care — few people want to go to nursing homes and few can afford 24/7 care in the home — it is imperative that we all get creative and let go of being rigid to how it ought to be.”

3. What do you expect of me and your other kids as you approach your dying season?

This conversation might include asking your parents about how involved they’d like you to be with things like personal care — bathing them or repositioning them in bed, for example.

“Being clear with your loved ones about their wishes for their care, assumptions and expectations of your involvement, can alleviate the stress of having to decide at the last minute or do something that will cause more agitation, resentment and hard feelings,” Sethi said.

“This is especially true for cultural norms and expectations in a modern world where children are not always local and there may be some unspoken assumptions and expectations of them that may not be met due to obligations, commitments,” she added.

4. What do you want us to do with your belongings after you’re gone?

Dealing with a deceased loved one’s possessions “can be a daunting task if not addressed or discussed prior to a death” — and one that can stir up a lot of conflict among living family members, said Sethi. So it’s best to talk this through with your parents ahead of time.

“There is much involved in distributing, selling, discarding or dispersing of belongings, cherished objects, furniture, cars, house, etc.,” she said. “It’s helpful for your loved ones still alive if you organize paperwork, designate your wishes for where personal objects are going — this avoids disagreements, drama and ambiguity — and get your affairs in order as much as possible before you go.”

5. What would you like to happen to your body after you die?

While it’s important to talk about their preferences for how their belongings are handled, it’s also important to discuss what will happen to their physical body.

“Do they know what their options are after they die? Have they considered a brain donation, what type of service they want, a home funeral, a green burial, a traditional funeral or cremation?” Talbot said. “There are so many more options today then they may even know. Knowing and asking what they may want after death is honoring their autonomy during their life.”

6. If you die before your spouse, what resources are available to help mom/dad as they age?

These resources might include long-term care insurance or money set aside for the care of an aging parent, Sethi said.

“Some parents have already bought into a retirement community. It’s important to know these things to best care for your living parent,” she said.

Advice On How To Broach These Conversations

End-of-life professionals share guidance on how to approach these difficult conversations with your parents.

First, know that it may never feel like the “right” time to talk about your parents’ end-of-life wishes. Don’t put off these conversations or wait for the perfect moment to strike because then they may never happen.

“The time to broach the conversation is now,” Sethi said. “It doesn’t serve you or your loved one if you continue to avoid it or ignore the reality of death.”

If you try to talk about end-of-life wishes when your parents are healthy, it’s possible they’ll think it’s “too premature,” she said.

“If you do it over the holiday dinner table when all the family is together, it’s ‘too serious,’ ‘too morbid’ or ‘not the proper time,’” Sethi said.

But if you hold off on talking about this until they’re diagnosed with a terminal illness, your family may still want to avoid having these discussions because it seems pessimistic, and they’d rather stay hopeful that things will turn around.

“And then, as someone is clearly dying, family may not want to broach the conversation for fear it may cause anxiety or depression — and oftentimes family and friends don’t now how to broach this conversation,” Sethi said.

She suggests revisiting end-of-life discussions roughly every three to five years or when there’s a major life event such as a divorce, serious diagnosis or decline in their health.

To open up the discussion, Periyakoil said you can try this pitch, which she has tested and said “works really well.”

“I am getting old, and you both are getting older. This is a wonderful thing for our family, and I hope we have many wonderful years together. As we prepare for the future, I would like us to think about completing some simple forms that will help our doctors and our family best support us,” she told HuffPost.

“If you get push back like, ‘Not now!’ or ‘It’s too early,’ you should gently respond, ‘It is always too early until it is too late.’”

No adult is ever too young or too old to start discussing these decisions, Periyakoil said. In fact, when you’re having these conversations with your parents, you can also start to contemplate your own preferences if you haven’t already.

Another way into the conversation is by leaning into what your family is interested in, Talbot said.

“If they love movies, there are so many great end-of-life films out there. If they or you love hosting dinner parties, consider a ‘Death Over Dinner’ night. Having conversations about planning for end-of-life and death can be healing and help to alleviate family conflict and unrecognized wishes.”

Complete Article ↪HERE↩!

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“Terminalism”

— Discrimination against dying people— is the unseen prejudice of our times

In hospice care and hospitals, we prioritize those with more life to live over those who are terminally ill. What is that, if not prejudice?

By Jonny Thomson

  • Philosopher Philip Reed defines “terminalism” as discrimination against dying, people or treating terminally ill people worse than they would expect to be treated if they were not dying.
  • Examples of terminalism include denying necessary medical care to dying people based on cost, prioritizing life extension over quality of life in allocation protocols, and granting experimental treatments only when conventional options have failed.
  • Reed argues that terminalism is unjustified and highlights the importance of recognizing the rights and value of dying individuals as human beings.

When you are dying, you are placed in a hospice. Often, this is a real, brick-and-mortar hospice with palliative care and psychological support. At other times, though, the hospice is a metaphorical one. The terminally ill are ignored by those too awkward or scared to face them. They are told not to work or exert themselves in the slightest. Dying people exist as ghosts and live in the hinge space between society and “on the way out.” When you’re told you’re going to die, you become invisible.

This has led the philosopher Phillip Reed to coin the expression “terminalism.” For Reed, terminalism “is discrimination against dying people, or treating the terminally ill worse than they would expect to be treated if they were not dying.” In other words, it involves treating those in a hospice — literally or metaphorically — as second-class citizens.

Here we look at three examples of terminalism and consider to what extent, if at all, it can be justified.

How quickly are you dying?

It’s both trite and existentially invigorating to say, “We are all dying.” If life is seen in terms of a finite number of heartbeats, we are all ticking our way to the grave. But if we are to discuss the rights of the terminally ill, we need to define “dying” a bit more closely. Reed discounts those who are likely to die in the extremely short-term; there is little to be said about discrimination against someone on an operating table or who is bleeding out on a battlefield.

Reed argues that those who will die imminently are not “socially salient,” which is to say that their state of dying will not be long enough to affect social relationships, social norms, or legal attitudes. As he puts it, “because membership in the group is, by definition, extremely short-lived, it cannot play a role in a wide range of social contexts for any one person.”

Therefore, if we are talking about discrimination as a social phenomenon, we have to talk about those who have been terminally ill for long enough to experience some kind of discrimination. Reed more or less settles on the established legal position of the U.S. and many in the West, in which “terminally ill” is defined as anyone who will die in the next six months from an illness.

Everyday terminalism

In an article for the Journal of Medical Ethics, Reed goes on to list examples of terminalism in our legal and social systems. Here, we look at three.

Too expensive to bother. If you want to receive hospice care, which is overwhelmingly palliative, you have to be in the last six months of your life. Yet, if you receive hospice care, you will stop taking (or not be offered) life-prolonging drugs, even when those drugs have palliative effects. Why bother wasting money extending someone’s life when their death is inevitable? What’s more, 78% of American hospices turn away patients requiring high-cost care. But, as Reed says, “There is a strong social consensus that people should not be denied necessary medical care simply based on the cost, and yet this happens regularly for dying people (at least if they also need hospice care).”

Allocation protocols. During COVID, most hospital systems developed rules of allocation for life-saving drugs and apparatuses. Those who were dying were at the bottom of the list. When an institution is suffering from limited healthcare resources, such as organs for transplant, they will often be biased against the terminally ill. Reed criticizes protocols that prioritize life extension over quality of life, as they implicitly undervalue the immediate needs of dying patients.

“Right to try” laws. While these laws ostensibly empower terminally ill patients to access experimental treatments, they also highlight a paradox. They grant a certain freedom only when the patient has been deemed beyond the help of conventional medicine, potentially relegating them to the status of test subjects when traditional care options are exhausted.

Reed suggests a useful thought experiment to highlight the prejudices in each case. He writes: “It is easy to see the discrimination if we change the eligibility criteria to another socially salient group: if we said that [the above applied] exclusively for racial minorities or trans people, the message would be that we do not care about protecting racial minorities or trans people.” We do not care about protecting dying people.

Justifying terminalism

Reed believes that a lot of people will find it somewhat ridiculous to call these instances a kind of discrimination. When presented with limited resources, surely it’s better to focus on those who have longer to live? In other words, isn’t it okay to value longevity over the moribund?

Reed calls this a structural “terminalist prejudice,” with little philosophical justification for it. He argues that “many of us tend to think, explicitly or implicitly, that a worthwhile life involves both the kind of life that has a future and also enables a person to ‘contribute meaningfully’ to society.”

We don’t want to see ourselves as cruel or prejudiced. We don’t want to accept that we are privately and socially devaluing human life based on our terminalist biases. Dying people are human beings as well. They have brothers and sisters; sons and daughters; or wives and husbands. They read books, watch TV, talk, laugh, and reminisce. If all humans have rights, dying  people have rights, too. They are valuable in themselves, not for some abstract, unknown “contribution” they might make. As Reed puts it, “The reason that terminalism matters is that dying persons matter.”

Complete Article ↪HERE↩!

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People may not fear death, but they dread the process of dying

By Barney Zwartz

Native Americans, I read recently, have a rather beautiful concept called “second death”. The first death is when breath finally leaves the body; the second is when someone says your name for the last time.

This is not entirely dissimilar from the notion at secular Australian funerals of “celebrating” a life. Stories, humour, sorrow and love honour the lamented lost, and help cement them in our memories – they too live on, in a sense, while they are remembered.

In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.
In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.

What surprises me is how often non-believers make remarks like “she’s in a better place now” or “he’ll be looking down from above” – a paradoxical cultural legacy from the Christian belief in heaven.

Yet perhaps it is not really surprising. After all, belief in an afterlife is near universal across cultures from the earliest times, as evidenced by prehistoric grave sites – it’s utterly fundamental, which is a form of evidence.

Non-believers tend to reject the idea of an afterlife as mere wish fulfilment, but their rejection could equally be understood the same way, for example, as a reluctance to admit the possibility of judgment. (This is the thought of the Christian version of the “second death”, described in the New Testament book of Revelation.)

The atheist understanding, like the Christian’s, is entirely a matter of faith – no categorical evidence exists either way, though Christians can point to the biblical accounts of the post-resurrection appearances of Jesus.

Melbourne oncologist and writer Ranjana Srivastava, in her compassionate and thoughtful book A Better Death, notes how unprepared so many people are to die who have never thought about mortality and cannot accept it – even people in their 90s.

Having supported so many people of various ages and circumstances as cancer takes their life, she writes that many suffer a sort of existential pain – denial, absence of meaning, recrimination, regret – that can be as hard to bear as the physical aspects.

The urgent thing, she says, is to reflect before we age. “Dying well is about treating ourselves and others in the last act of life with grace and goodwill,” and there can be many moments of happiness, fulfilment and discovery that give meaning to life.

Death is today’s great taboo. People may not fear death, but they dread the process of dying. As Woody Allen quipped, he’s not afraid of dying, he just doesn’t want to be there when it happens.

These days, it seems, we all want to die painlessly in our sleep, preferably unexpectedly with no suffering beforehand. This is a stark contrast to previous centuries, when people wanted time to settle their affairs, take their leave of loved ones and, in particular, prepare to meet their maker.

Perhaps that’s a better death, both for the dying and for those they leave behind.

Complete Article ↪HERE↩!