04/7/18

The ‘Outside Lands of Death’ is coming to SF

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In just a few weeks, almost every corner of San Francisco will have death at its heel. The topic both universally experienced — and stigmatized — will be up for discussion in a variety of forms around the city.

A worker changes the Great American Music Hall’s marquee before You’re Alive, an event staged by You’re Going to Die, on Friday, Aug. 11, 2017, in San Francisco.

Reimagine, a nonprofit sprouted from IDEO, is putting on the Bay Area’s first so-called “death event series.” More than 100 events, each hosted by an individual organizer, will be offered to the public beginning on April 16 up until April 22. The nonprofit expects 7,000 people who are still alive to attend.

The events will cover all the ways death alters our lives — from the pragmatic (working with physicians to get Advanced Directives straightened out) to the artistic (drinking from ceramic cups made using the ashes of 200 anonymous people) to the literary (the science around the use of psychedelics and death with Dr. Richard Miller).

There will be highly-mortal film screenings (including a talk with Lee Unkrich, director of “Coco”), comedy shows (Mortified: Let’s Talk about Death, Baby), and psychodrama taken to the next level (Dead for a Day: Attend your own funeral to “altar” your life). Actress Francis McDormand will also be at the Castro Theater on April 19. for a “Theatrical Exploration of Death, Dying and Suffering.”

Aside from the arts, the events will draw on the subjects of healthcare, design, and spirituality. Brad Wolfe, Executive Director and Founder of Reimagine, wanted the event series programming to be valuable for — and reflective of — as many people as possible.

The death-positive movement — which is broad enough to contain anything from Caitlin Doughty’s Ask a Mortician YouTube series to amateur banjo sessions about the beautiful uncertainty of our mortality — has valiantly taken on the challenge of eliminating a major stigma. But in some cases, it has also been critiqued for being white-centered, and glamorizing a topic that has never, and will never, for many communities of color, feel whimsical.

That concern is exactly what Reimagine’s founders kept in mind, in the pursuit of designing an event series that would be inclusive of people outside death talk’s main demographic: middle-class white people who have the luxury of mortal musings. One such event will be hosted by Dr. Jessica Zitter, a Critical and Palliative Care Specialist at Oakland’s Highland Hospital in conversation with Pastor Corey Kennard at Glide Memorial Church.

The talk will explore the wealth of research behind racial inequities in healthcare at the end of life, and discuss the divide between dying African-American patients and a healthcare system that falls short of providing the right kind of support.

Zitter wrote an insider’s perspective on the problems with the way the dying are treated in our current medical culture in her 2016 book, “Extreme Measures: Finding a Better Path to the End of Life.” The book has been lauded by the likes of BJ Miller, a UCSF doctor and triple amputee and Lucy Kalanithi, a Stanford doctor and the widow of a Stanford doctor whose memoir on dying from cancer was released posthumously.

Her conversation with Kennard will also touch on her anecdotal experience with an aspect of healthcare that’s untaught in the medical world: finding a common language with patients who are dying that’s beyond the withdrawn and overly sterile protocol.

In her practice, she said, she underestimated the role that things like prayer, miracles, and hope mean to her African-American patients, who, “come into a hospital in their darkest hours and are met with language and concepts that feel like in a way that they’re robbing of their humanity, robbing of their opportunities for being whole.”

It was only through the years she’d been working with Betty Clark, an African-American chaplain, that she began to notice the vital components of healthcare support for her patients of color that she’d overlooked.

“There are many, many areas I had wished to delegate to others that I felt were not part of my job that are absolutely part of my job.” Zitter said.”But I really have to say that it’s really powerful to [pray with my patients]. It’s not necessarily about God, but it’s about connecting to them, and supporting them.”

The second in her series of discussion with Kennard will take place at the Oakland Museum of California on April 17., and cover the intersections of faith and medicine at the end of life.

A full event schedule is available on Reimagine’s website. Some highlights are in the slideshow above.

Complete Article HERE!

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04/6/18

How complementary therapies can positively impact end-of-life care

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By Mary K. Spengler

One of the most common misconceptions about end-of-life care is that the focus is solely on pain management. While that is a key component of any hospice care program, many providers, including Hospice of Westchester, recognize the importance of a holistic approach to treating the patient, not just their symptoms. It is a proven fact that patients diagnosed with a life-limiting illness greatly benefit from alternative therapies, in addition to medical treatment.

Often called complementary care, these therapies can maximize patients’ comfort and peace of mind and provide relief for their primary caregivers.

Caring for the “whole” patient is an essential feature of hospice. Mind-body complementary therapies such as massage, reflexology, music therapy, art therapy and pet therapy can help ease tension, reduce anxiety levels and improve the overall comfort of the patient.

A good hospice provider should arrange for these therapies to be provided in the patient’s residence, whether that be their home, a hospital or a skilled nursing facility. Together, the patient, their family and hospice team decide which therapy would best address symptoms of pain, stress and anxiety.

We are proud to offer all of the above therapies, at no cost to our patients, through The Anna & Louis H. Shereff Complementary Care Program. While they all can be useful depending on a patient’s needs, here is a closer look at how massage therapy and reflexology can positively benefit hospice patients and their families.

MASSAGE THERAPY
It is widely accepted that power of touch can have a healing impact on pain and decrease stress. Massage is a form of structured therapeutic touch, which can relax patients, relieve muscle tension, reduce anxiety levels and blood pressure, boost the immune system and moisturize the skin.

Licensed massage therapist Maria MacIlvane first recognized the positive effect of touch years before she started her massage career. When her mother was on hospice care, MacIlvane was awed that simply rubbing her mother’s shoulders would instantly bring upon relaxation.

“I continued to massage her every day. It was so beneficial and I could not believe that just touching someone compassionately could affect the process they were going through so deeply,” MacIlvane said.

After the death of her husband in 2007, MacIlvane needed a change and wanted to pursue a career she was truly passionate about. She became a licensed massage therapist in 2010 and expanded her therapies to hospice patients three years ago.

MacIlvane said there are many benefits of massage therapy on patients diagnosed with a life-limiting illness, including helping with muscle tension, circulation and anxiety. She also works with patients’ family members to teach them what they can do in between sessions to help their loved one, and even gives them tips for acupressure that can help with their own anxiety and stress.

“When patients know that someone is with them, holding their hand and providing a compassionate touch, the effects are amazing,” MacIlvane said.

REFLEXOLOGY
Reflexology is based on the belief that specific areas of the feet and hands correspond with specific parts of the body. Gentle stimulation of these areas with the thumbs and fingers relieves stress and tension, improves circulation, promotes normal body function and results in a feeling of deep relaxation.

Gabrielle Zale, a nationally certified reflexologist, began working with hospice patients shortly after starting her career 17 years ago. However, her knowledge of how touch could help those with an illness started many years earlier. She remembered how people pulled away from her own mother when she was sick, as if they were afraid to touch her.

“No one should feel that alone,” Zale said. “Ultimately, touch is the greatest healer, particularly at this final journey in life. Even though some patients may not be awake and alert, by touching them in this way you are acknowledging that they are still there and still part of the world.”

Zale said that, even if a patient can’t speak, she is able to sense small body changes that show the effects of her practice. “It’s a subtle energy shift. Their breathing slows down — you can tell they are relaxing and may be feeling less pain and anxiety. They can tell that you are acknowledging them and are really present with them,” she said.

“This work is a really sacred thing for me. I’m not just holding another person in my hands, I’m holding their soul in many ways.” 

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04/4/18

A Sunny Day at the Death Cafe

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What if talking about death didn’t have to be a downer?

By

Good morning on this pleasant Tuesday.

The last place you might think to spend a sparkling spring day is at a death cafe.

But that’s exactly what we did this month, and what we found, to our pleasant surprise, was anything but bleak.

On the second Tuesday of each month, the landmark Green-Wood Cemetery in Brooklyn hosts a “death cafe,” a salon-style gathering in which visitors can speak openly about death and mortality.

The death cafe movement, started in England in 2011, is now a global tradition taking place in coffee shops, offices and other unlikely spaces in dozens of countries. Its goal is to make conversations about dying — from the philosophical (is there an afterlife?) to the mundane (metal urn or marble?) — less taboo.

When we joined a recent death cafe at the cemetery, we expected an evening of tissues and tears with a group of New Yorkers in mourning.

The reality was quite the opposite.

We met a lively bunch of strangers, ranging from young adults to octogenarians, most of whom were not grieving at all; they had, instead, come for an intellectually stimulating, if at times uncomfortable, discussion.

“Death cafes are a kind of beautiful rehearsal for coming closer to death and understanding it and grappling with it, so that when we do have a death pending in our families, as is inevitable, we might be a little more prepared for it and slightly less rattled,” said the funeral director and death educator Amy Cunningham, who facilitated the get-together.

“There’s no agenda — nothing is sold or prompted — so it can go in all kinds of interesting directions in a totally natural way,” she said.

Between sugar cookies and laughs, our group jumped from religion to social media to psychotropic drugs to contemporary ethics.

“Can you be buried with your pet?” one woman, a documentary photographer, asked the group, following it up with a conversation on approaching death from a nonreligious perspective.

“How do you handle the loss of an estranged family member?” another wondered, prompting a third — who had lost a relative the week before — to speak about the death of her distant father.

She and her husband then debated the pros and cons of learning of a death through Facebook. Several minutes later, he told the group a separate story about the deathlike “static peace” he felt while tripping on the drug DMT.

(My contribution to the discussion: sharing how self-conscious I feel about what to say or do at funerals.)

“As frightening as it may seem,” Ms. Cunningham said that night, “there are many amazing things that can occur and ways to grow and carry grief through the next chapters of your life, and this is the way we evolve — through moments that seem so painful but then have hidden miracles of ecstasy.”

Green-Wood will host its next death cafe on April 10, and you can learn more through Death Café New York City or the Death Lab at Columbia University.

Complete Article HERE!

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03/30/18

10 Questions to Consider When Preparing for the Death of a Loved One

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By John O. McManus

Death represents a significant and vulnerable point in time for both the individual facing it and his or her loved ones. As part of its Educational Focus Series, McManus & Associates, a top-rated estate planning law firm celebrating more than 25 years of success, today identified “10 Questions to Consider When Preparing for the Passing of a Loved One.” During a conference call with clients, the firm’s Founding Principal and AV-rated Attorney John O. McManus offered guidance on how to ensure optimal end-of-life care for oneself and loved ones. To hear his recommendations, go to http://bit.ly/2COi3R1.

“Death is an uncomfortable topic for many people, but it should be accepted as a natural part of life,” commented McManus. “While everyone would prefer to focus on life, a significant amount of stress related to death can be reduced by proper planning.”

10 Questions to Consider When Preparing for the Passing of a Loved One

  1. Know one’s options: What is the difference between hospice and palliative care?

Both hospice and palliative care provide end-of-life care, including symptom management and comfort for an ill patient while he prepares for death. Both also offer end-of-life care in the home or in a facility and have a team of specialists who deliver this care. However, there are a few differences:

2. Dot your i’s and cross your t’s: Are all the necessary legal documents in order?  

While competent, one’s loved one should express her wishes to guide family members in the event she cannot make decisions for herself. This includes directions as to what type of care she wants; whether she would like to donate her organs and when that should be communicated to medical professionals; preferred end-of-life care (hospice or palliative care) and location. This can be included in a health care directive or in a separate letter to the family but should be done with a greater level of formality – such as with the help of an attorney – to communicate the legitimacy of the loved one’s wishes.

  1. Health care directive/proxy: In this document, the loved one will appoint a surrogate decision-maker or proxy to make medical decisions for her once she is no longer considered able to make competent decisions and provide informed consent. Without this in place, family members will not be able to make medical or care decisions for their loved one; they will have to go through the courts to attain permission. This process can be time-consuming and expensive, detracting from the care of the patient.
  2. Living will: This document tells family members and surrogate decision-makers whether the loved one would like to receive additional measures of care. This includes instructions for extraordinary measures such as respirators, resuscitation, antibiotics, and withholding or withdrawing life-sustaining treatment. This is also a good place for the patient to instruct whether she would like her organs donated after her death.
  3. Health Insurance Portability & Accountability Act (HIPAA): This document protects the privacy of the patient’s medical records and other information. This is especially important if the loved one is unable to make competent decisions, allowing family members to get second opinions and to transfer her between facilities.

3. Broach the subject: Has there been a discussion with the loved one to understand what his or her wishes are? 

Ultimately, the loved one should be in control of her death and family members should know what that means for her. When the time comes that she is no longer mentally competent to make her own decisions, her surrogate decision-maker will step in to be the voice of the patient. It is important for the surrogate decision-maker to keep in mind the patient’s wishes. This is by no means an easy conversation but can help bring peace of mind to the loved one knowing what a good death means to her is understood.

4. Nail down the timeline: When does the loved one want end-of-life care to begin? 

Studies have found that there are many people who put off end-of-life care. This is often because the patient is still fighting his illness and does not want to receive end-of-life care until he is done receiving preventative treatment. This can minimize the benefits of end-of-life care, as he has less time to prepare for death. To be eligible for hospice care, patients must be within their last six months of life. If the loved one is not yet done fighting his illness, hospice may not be the right decision. If he wants to continue receiving preventative treatment, palliative care may be the better option. It is important to note that when hospice care starts, the loved one will no longer see his regular doctors, and will only be under the care of the hospice staff. However, if a new treatment becomes available while the loved one is receiving hospice care, he can leave hospice to receive life-prolonging treatment.

5. Research reputation: Has one discovered all that can be discovered about the potential care facilities being considered?   

Not all facilities offer the same benefits. One should look at the reputation of each facility, and ask for references from them, in addition to looking up reviews online. One should also ensure that they provide quality care and do not have a history of promising services that were not delivered, and find answers to questions like, “Do they have a history of withholding pain medication from patients due to fear of addiction? Do they have a history of ethical or staff issues?” Additionally, one should ask when the last time the facility was inspected by the state or federal government, which should reveal if there were any issues. If there were, one should be sure that they were resolved.

6. Find out who is behind the mask: How well does one know the loved one’s care providers?  

Few medical professionals have explicit training in death and dying. Talking to the loved one’s doctor may help form a more personal relationship and make the loved one feel more comfortable. Learning about the communication habits between the doctor and her colleagues is extremely important; one should be assured that all staff coming and going knows what has been done before they arrived and why. Also, as mentioned above, when the goal of end-of-life care is to provide comfort, reports of staff withholding pain medication can be an important concern. Finally, some facilities use volunteer services who interact with patients and their families, and learning what screening and training they have had can bring peace of mind. 

7. Do due diligence: Has one done his or her own research? Have all factors that could influence one’s decision been explored?

Not all facilities are created equal. Hospice and palliative care have facilities across the nation; however, their standards vary. One should ask the facilities being considered for references. If anyone who has been in a similar situation is known, one should ask him or her how he or she was treated by the particular facility’s staff and if they followed through with their promises. Also, one should ask care providers to share what can be done by the patient’s loved ones to help. Most importantly, one should ensure that he or she is well-informed on the ethical issues in this area of care.

8. Learn the ins and outs: Is in-patient or out-patient care best for the loved one and family?

The physical location for end-of-life care is a significant decision for the loved one. It is important that she feels comfortable in her environment during the final days of her life. Unfortunately, this is not always possible to achieve, since some families may not be physically equipped to care for their loved ones at home (out-patient care) and some are not financially able to allow their loved ones to stay in a facility (in-patient care).

9. Prepare Plan B: Does one have a backup plan?  

This may be most important for those who have decided to use out-patient care. Despite what promises are made by the end-of-life care provider, families should always have a backup plan. Recently, stories in the media have drawn attention to negative hospice and palliative care experiences. The reasons have ranged from poor communication to organizations not delivering on their promises. A common complaint is that staff does not treat the needs of patients who are in pain as time-sensitive, and the loved one’s doctors and nurses were unreachable. For situations such as these, it is important to have an alternative.

One option that many have found helpful is to have a comfort kit, which includes two pain relievers that can be administered to the loved one, should he be in pain when help is unable to come in a timely manner. One should ask for a comfort kit from the loved one’s care providers and shown how to properly administer the medication to the loved one.

10. Ask for help: Could the loved one and his or her family benefit from counseling?

Death is a highly stressful process for the person who is dying and her friends and family. It is extremely important for all parties to feel informed about what they are undergoing. The loved one should be able to reach a point of finitude, coming to grips with eventual death – this is a long process that can occur on many levels. On a surface level, this can begin with preparing any necessary legal documents, and on a deeper level, this can include reminiscing, enjoying positive moments, saying goodbyes, passing on sentimental items of significance, and legitimizing her life how she sees fit.  This should not solely be left for the loved one to realize on her own. When faced with a terminal diagnosis and death, people have many different reactions. It is important to offer the loved one guidance during this time. This will allow the loved one to have a death filled with control, dignity, peace, and finitude.

While this process has an end for the loved one, the family members must continue to live their lives. Rituals after death such as religious traditions, a funeral and/or a memorial service can be helpful, serving as a distraction and time to celebrate the loved one. However, at the end of this ritual period, family members will no longer have any distraction from their grief and may need guidance. It is important for those left behind to understand healthy coping techniques and the stages of grief they are experiencing.

“It is important to talk about death with loved ones – there are emotional benefits to reflecting on a life spent together, and expressing gratitude and admiration,” explained McManus. “It is also crucial to ask difficult questions so that the topic receives adequate attention and preparation

Complete Article HERE!

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03/28/18

Learning how to think about death changed how I live

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Viewing death as unrelated to life, or antithetical it, does a disservice to the days we have, because we don’t know how to value them, says John Leland. The journalist and author explains how an elderly friend changed his perspective on the importance of acknowledging our mortality.

Read the Full Transcript

Judy Woodruff:
New York Times reporter John Leland began following a group of men and women in 2015 who ranged in age from 87 to 92.
What he learned shattered his expectations about aging and death, as he explains in his Humble Opinion.

John Leland:

People are always telling us to live each day as if it’s our last, but we don’t really do it, and for two good reasons.

The first is that, if you really thought today was your last day, you wouldn’t pay the utility bill or save for retirement, and, before you know it, you’re in the dark warming a can of beans over an open flame.

And the second reason is that we don’t like to think about death or dying, except as something that happens to other people.

A few years ago, I met a man named John Sorensen, who taught me how to think about death, and it changed my outlook on life. He was 91, and he missed his partner of 60 years. And every time I visited him, he said he wanted to die. He wasn’t depressed or even sad.

In fact, talking about dying always got him in a good mood. Wanting to die, for John, was the best reason to live.

And what I mean is this. He loved opera and he loved old movie musicals. And wanting to die meant acknowledging that this might be the last time he heard Jonas Kaufmann sing Wagner or watched Gene Kelly singing in the rain. This made each time more worthy of his attention.

And the same went for visits with friends. It’s a textbook economics of scarcity. His days weren’t fleeting. They were saturated with pleasures of his own choosing.

In our culture, we have come to think of death as a kind of failure of medicine or an affront to the self, rather than seeing mortality as built into all of our days, the first as much as the last.

Viewing death this way, as unrelated to life or antithetical to it, does a disservice to the days we have, because we don’t know how to value them. We enjoy a movie more knowing it’s going to end in a couple hours.

That ski run in the Swiss Alps, it’s only fun because you know there’s a bottom. The end of the run gives meaning to each curve on the way down, even when you’re still near the top of the mountain.

I have heard this acceptance of the end from most of the older people I have spent time with.

But you don’t have to wait until we’re 91 to enjoy it. We should rethink what it means to live every day as if it’s your last. The way I learned it from John, it means embracing that part of the end that exists in this moment, and then in the next.

You don’t have to quit your job or stop paying your utility bill. There’s enough to live for in the things you’re already doing. Each brush with a stranger, each moment with friends, each kiss or caress, there’s a little bit of our mortality in all of them. But their ours for now.

And that is reason to be happy.

Complete Article HERE!

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03/27/18

Coming to terms with the end of life

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by Penny Heneke

Being well ensconced in my senior years, I am faced with the daunting prospect of my mortality. An article I read recently commented that people are afraid to face and to speak of this pending permanent change of address. For me death lurks in the dark like a boogey man under the bed. An elderly, crabby aunt I boarded with as a teenager scanned the death notices each day. She positively cackled with delight when she discovered an acquaintance she had outlived.

Nor is death and dying a scintillating topic to introduce for conversation in an evening entertaining friends. While seniors are renown for recounting “organ recitals” of their many health problems in great detail, death itself is a taboo subject. For some, life is a painful battle against debilitating health issues and for most of us it is trying to find strategies to deal with the everyday evidence of our evaporating capabilities along this final stage of our life journey.

Perhaps a sense of humour is a valuable tool to deal with our aversion to death. A friend on his 90th birthday decided to deal with his advancing age by walking around with a sticky note plastered on his forehead announcing, “expiry date: overdue.”

In the meantime, seniors have to cope with the everyday incomprehensible things we seem to do as we amble along to this dead end. If the solution were only as simple as one friend remarked: “Oh, for some happy pills.”

One morning, my husband, Ken emerged from the unlit walk-in closet attired in my fluffy, light blue, terry housecoat. It fitted him to a tee, as today my hubby is a shell of his former robust five-foot-10. Shrinkage of over 4 inches has occurred due to arthritis. When he realised his faux pas, he looked sheepish and commented: “I’m really losing it.”

I couldn’t laugh too loud as I find myself in the same category. At my recent optometrist appointment, I was squinting through the phoropter the optometrist was using to test my eyesight, not wishing to admit that the finest print was a blur. I had always had 20/20 vision. In an attempt to improve the images, I closed one eye. As the consultation continued with the instrument going back and forth, I suddenly could not see anything in the one lens — just blackness. My optometrist was puzzled and made some lens adjustments.

“Can you see now?” she asked.

“No, it’s still pitch black,” I replied. “I can’t see a thing.”

She sounded puzzled and moved the machine aside. After a moment’s hesitation, she placed a hand gently on my shoulder and remarked: “My dear, you have your eye closed!”

While my vision might be fading fast, Ken suffered a mini-stroke and lost the use of his right eye. Family and friends responded sympathetically by telling him of someone they knew with the same predicament and yet was still legally able to drive. Neither Ken nor I felt reassured learning how many one-eyed people are out there on the roads driving.

I don’t think it was his eyesight that caused Ken to panic as he was leaving for a doctor’s appointment. He patted his pockets frantically looking for his car keys until I pointed out that he had them in his hand.

Never mind the missing death discussion, aging itself takes a great deal of adjustment. My recurrent nightmare of losing my teeth has been replaced by one of losing clumps of my hair and going bald.

After spending a life time amassing material objects, I have reversed the procedure by decluttering. Now I am fine tuning the unburdening of my “stuff.” I am in the last stage, which I am calling, “closure.” This is as close to the “D” word as I can get.

Preparing for the end, I announced to my children that I was drafting my own obituary notice. I don’t trust them to get the facts right. This resulted from my perusal of the obituary notices each day in the daily newspaper. My first feeling is one of sadness looking at all the smiling faces of people who have passed. However, I am also struck by a few who have had unflattering photographs placed with their notice. In order to avoid this dilemma, I have picked a photo — admittedly a good few years younger — of myself for my obituary. My daughters love to tease me by saying that I will have no control over the whole issue. At least I would have tried.

The lyrics from the English punk rock band, the Clash, “Should I stay, or should I go” underscore that we really have little choice in the timing of our departure so it’s best to make the most of what you still have left of life.

Complete Article HERE!

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03/24/18

Dying Young and the Psychology of Leaving a Legacy

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Often the biggest existential distress that we carry is the idea that no-one will remember us when we are gone—initially we know that our friends and family will hold who we are, but after a generation, these people are likely gone too. At the end of life, the pressure to leave an unquestionably relevant legacy can be crippling for people, particularly for young people. When coupled with the limited energy that people have when they are unwell, the very nature of what people expect to achieve in the world shrinks, and the really important pieces come into focus.

When time is seen to be limited, every moment can take on a weight that has never before been experienced. Some of these expectations come from within and some externally, but regardless of their origin they can be paralyzing for the young person facing their mortality, particularly when unwell. Culturally, there are multiple references as to what ‘dying young’ is meant to mean and most refer to extraordinary and often unobtainable expectations. For instance, members of the ‘27 club’ (celebrities who die on or before their 27th birthday) and notable cancer-related concepts around ‘bucket lists’ and works of fiction (e.g., The Fault in Our Stars). Most young people, particularly those who are dying, do not have the capacity or the options to engage in an extraordinary feat, they can become overwhelmed and paralyzed by what they are ‘meant to be doing’.

Often, as is the case with many things in life, simple and small are the gestures and moments which are the most meaningful, with huge projects and adventures feeling too overwhelming and out of the grasp of someone with limited energy and resources. As such, the fantasy of what something may have looked and felt like, had they have been well, is a much more satisfying space for them to sit with. Similarly, relationships become much more meaningful, as do the simple things that are taken away through the treatment process, like being able to sit in the sun or go to the pub with a friend.

Young patients can be bombarded with well-intentioned suggestions about what they ‘need’ to do, including making future legacy-based activities, such as leaving cards for each of their younger sibling’s birthdays, video journals of their death, or chronicling how they feel about all the people in their world. Although these are good ideas, they are emotionally and physically difficult to manage with limited resources. Patients need to be feeling very resilient and well before attempting any of these things with most being abandoned due to the confronting nature of conceptualizing the world without them present in it. It is a difficult ask for anyone to be able to take the relatively abstract idea of the world continuing following your own death; this does not change for young people and, in some ways, it is even more challenging due to their pervasive sense of self, even in the face of very real threats to their mortality.

The way that young people respond to being presented with a very limited life expectancy can vary tremendously. Some may stick their head firmly in the sand and refuse to discuss or conceptualize anything about what may happen in the lead-up to their death, or following. Others will organize everything about the end of their lives, including where they want to die, how alert they want to be, as well as what will happen following their death—such as where their belongings go and how they want to be remembered. For most people in this situation, in an existential sense, almost everything is out of control, the disease will do what it does, the pain is what it is, and they are an observer to the things happening in their bodies. The things that people can control is what they talk about, how much they talk about it, and who they talk about it too.

Just because death, dying, and legacy are not being talked about, does not mean that it is not in the consciousness and thoughts of the person pondering their own end. Instead, it may be that they have done as much thinking and talking about it as they need to do; it is often these patients that have very well-considered plans about what they want to happen as they deteriorate and the decisions that must be made about their care.

Complete Article HERE!

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