Month: August 2021

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Dying isn’t as bad as you think

The thought of death makes many of us feel frightened, so we barely talk about it. But dying is far gentler than Hollywood would lead us to believe.

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Here’s a delicate truth: we’re all approaching the ends of our lives. Every day counts us down, it’s just that most of us rarely talk, or even think, about it. And when we do, we feel scared of pain and panic and feeling out of control; afraid of sadness and saying goodbye; worried about deaths we’ve seen on TV or in films.

I’ve worked in palliative medicine for over 30 years, helping to improve the conditions of those nearing the ends of their lives. I’ve sat by the bedsides of scores of dying people and it’s taught me a lot about the realities – and misconceptions – of death.

More than half a million people die in the UK each year and almost all of them from a condition that gives at least some warning that death is approaching. If you knew you had limited time left to live, what would you want to do? Who would you want to be with? Are you keen on hospitals? Could your home be suitable? What’s your opinion about being kept alive on a ventilator, even if you’re unlikely ever to regain consciousness? How much treatment is too much? Are you an organ donor?

Here is some good news: death is almost certainly not going to be as bad as you think. Just like birth, death follows a predictable pattern. Initially, illness reduces people’s energy levels. The mechanisms are complex, but the outcome is that they need more sleep. Naps help, but energy is quickly used up, and another snooze is required.

 

At the end of life, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that.

As time goes by, those naps last longer and change in character. Although the person doesn’t notice any difference, they dip into unconsciousness for a while, so we’re temporarily unable to wake them. At this point, it’s time to switch any symptom-managing medications to a subcutaneous route like a syringe pump, to stop any symptoms from coming back if we cannot rouse the patient when their medicines are due.

If their illness isn’t affecting their thinking, then a dying person will still appreciate their family and friends when they’re awake, the occasional sip of fluid, perhaps a spoonful of something tasty, although people rarely have much appetite. They may stay in bed. They may appreciate peace and quiet, or their favourite music (I’d prefer BBC Radio 4, by the way). The periods of unconsciousness get longer and, eventually, the dying person is simply unconscious all of the time.

We can change evolution © Scott Balmer

Now, the next change begins: in deep unconsciousness, breathing is driven by the only part of the brain still functioning. This produces an automatic breathing pattern that cycles between deep, sometimes noisy breathing and very shallow breathing. The rate also alternates between fast and slow; there can be gaps that are several seconds long. Saliva may gather in the throat, causing air to bubble through the fluid, which makes a rasping or rattling noise. These noises are a sign of deep unconsciousness, not of distress.

At the end of life, during a phase of slow, shallow breathing, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that. Sometimes so gentle that the family around the bed doesn’t notice. No pain or panic; no sense of loss of control. This is what the vast majority of people experience.

By knowing this gentle pattern, dying people can make choices about where and how to be cared for. Their families are often asked to report dying people’s wishes. Do you know the answers? Does your family know yours?

Complete Article ↪HERE↩!

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Substance Use Disorder Can Complicate Grief

People with a history of Substance Use Disorder are more likely to turn to unhealthy coping mechanisms after a loss. Here’s how to avoid that.

By The Fix staff

In the past eighteen months, more than four million people around the globe have died from COVID-19. This massive loss has shined a spotlight on a normal, but painful, part of daily life — grief. Grief can occur for a variety of reasons: you can grieve the loss of a relationship, or the end of a career. However, the most acute and deep grief often comes around death.

Although there’s no prescriptive way to move through grief, there are healthy ways to process loss. If grief begins interfering with your daily functioning and keeps you from healing, you may be experiencing complicated grief. This condition can have a big impact on your life, and often requires medical treatment.

Here’s what you should know about grief, especially if there is a history of substance use disorder in your family.

Grieving can be incredibly painful. That often leads people to look for coping mechanisms to get through. This can be problematic for people who have a history of substance use disorder. Research has shown that people who have a history of addiction are more likely to experience complicated grief, the type that keeps you from moving on and healing. In addition, when people with a history of substance use disorder experience complicated grief, they’re more likely to turn toward maladaptive coping strategies, like using drugs or alcohol.

If you experience a loss, you should try to be proactive about maintaining your sobriety while you are grieving. Talk to trusted loved ones and medical professionals about how to cope with the pain of grieving if you are struggling. Have an emergency plan so that you know what to do if you’re very close to relapse, or if you have used.

The Stages of Grief

Most people have heard of the five stages of grief. Although people don’t move through the stages in a predictable manner, the stages can help normalize how you feel when you’re grieving. This alone can be helpful, reminding you that many other people have been through what you’re experiencing.

The five stages of grief, as explained by researcher Elisabeth Kübler-Ross, are:

  • Denial: When you first experience a shocking loss, you might not be able to comprehend it. The denial phase is characterized by feeling numb, and focusing on just getting through each day.
  • Anger: As you begin to understand the depth of your loss, you may become angry about it. You might feel abandoned by God or the universe, or that the loss is unfair. Although anger might feel like a surprising emotion while grieving, it’s important to feel your anger and move through it.
  • Bargaining: During the bargaining phase, you try to exert control and change the outcome of the loss. You might find yourself saying things like, “I’ll stay sober, as long as I get my mom back.”
  • Depression: At this stage, the reality of loss has settled in. You’ve realized that you can’t bargain a solution or rail against the injustice of the loss. You settle into depression, which may put you at increased risk for relapse.
  • Acceptance: Finally, after moving through the pain of grief, you might find yourself coming out the other side. You may notice that you’re remembering your loved one with joy and gratitude, rather than just focusing on the pain of losing them.

The New, Sixth Stage of Grief

Recently, David Kessler, a grief expert who worked with Kübler-Ross, introduced a sixth stage of grief: finding meaning. To truly heal from a loss, you must find a way to create a meaningful life, living in a way that honors the person you loved and the meaning of their life.

This sixth stage is especially important for people who have a history of substance use disorder. In healing from addiction, it’s important to create a meaningful life. This can give you the impetus that you need to stay sober. Focusing on the components of a meaningful life — self-awareness, positive relationships, and intrinsic motivations — can support you in overcoming grief in a healthy way.

A Hand to Hold: When to Get Help

Grief can become overwhelming. Communicating with your healthcare providers and your recovery community can help you navigate the grieving process. However, if you experience any of the following, you should reach out for more immediate help:

  • An inability to recall good, happy memories about your loved one.
  • Being unable to acknowledge or accept a loss
  • Having thoughts of self-harm or suicide
  • Thinking frequently about drug or alcohol use or relapse.

Grief never goes away entirely. However, you can learn to incorporate grief and memories into your life in an emotionally healthy way, remembering what was, while continuing to live your life in the present and future.

Complete Article ↪HERE↩!

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When It Comes to End-of-Life, Some Are Taking Matters Into Their Own Hands

It’s called the VSED option — the refusal to eat or drink. The goal is to hasten death and it’s perfectly legal.

By Kevyn Burger

Some patients diagnosed with terminal illnesses or chronic progressive diseases find the prospect of a long decline, great suffering or significant deterioration to be intolerable.

For those with the desire to hasten their own death, one option is to refuse to swallow food or sip liquids. The practice, known as “voluntarily stopping eating and drinking,” or VSED, typically results in death within 10 days to two weeks.

“People have been dying this way since time began. It’s a natural way of dying, but people should know they can’t do this by themselves. They need to be attended by those who are knowledgeable about symptom management who can help them have the least bad death possible,” said Judith Schwarz, the clinical director of End of Life Choices New York.

A registered nurse with a Ph.D., Schwarz has written and lectured widely on the practice and advised hundreds of people who have chosen and followed through with the VSED option.

Now she has collaborated with a palliative care doctor, a bioethicist and a law professor specializing in end-of-life issues to co-edit a comprehensive, first-of-its-kind book on the subject.

First-of-Its Kind Book on VSED

Published this month by Oxford University Press, “Voluntarily Stopping Eating and Drinking, A Compassionate, Widely-Available Option for Hastening Death” takes a multi-disciplinary approach to explain both the practical complexities and ethical conundrums of the process to patients, their families and the medical clinicians who care for them.

“People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process.”

Hastening death via VSED is not an impulsive decision. Schwarz describes the people she advises about how to die this way as “well informed and determined,” embarking on the process after securing aid from experienced guides.

“They understand that they need family and caregiver support, twenty-four/seven care at the end from people who understand why they made this decision,” she said. “They need access to palliative or hospice oversight. Medications must be available to the patient to aggressively treat symptoms of pain.”

Co-author and palliative care physician Dr Timothy Quill, of Rochester, N.Y., finds that many of his patients who have pursued VSED shared a personality type.

What a VSED Patient Can Expect

“Of what I call the last-resort options, VSED is the mostly widely available and the least widely described,” he said. “People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process. They are on the sicker end of the spectrum and want an option to speed things up. They are prepared for the end of their life.”

The new book offers case studies that detail what a patient who chooses VSED can expect in the dying process

Book cover of, Voluntarily Stopping Eating and Drinking. Next Avenue, VSED, end of life

“At first they’re up and around and it’s a time for family to come together, for saying goodbye. They gradually get weaker, the world starts getting smaller and they become less responsive,” said Quill. “As they get dehydrated, their blood pressure drops and that causes organ failure.”

After the first day of no food or liquids, hunger tends to ease, but thirst becomes overwhelming. But even the use of ice chips or hourly sips can prolong the process. So, an oral care strategy that includes swishing and spitting, swabbing and using mists that don’t rehydrate the patient must be planned.

Schwarz notes that most VSED patients experience agitation, delirium and/or hallucinations in the 24 hours before death.

“Everyone has a period of this, and they need anti-anxiety meds and strong tranquilizers to medically manage symptoms so that the delirium is not intrusive, frightening or awful,” said Schwarz. “At this time, family can be present, holding the patient’s hand or playing the music they like. I say, ‘Don’t disturb them, as they are on their journey leaving this world.’ I can assure them that their loved one is not suffering. At the end, they stop breathing and their heart stops.”

Complete Article ↪HERE↩!

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How to help your child deal with the death of a loved one

“The best thing you can do is be present and empathic.”

BY

When I lost my father suddenly to a fatal heart attack four years ago, the pain of loss and subsequent grief were overwhelming. At the time, my husband and I had two little girls (ages 5 and 2), who were very attached to their PopPop Geno, and in many ways, they were my path through grief.

I had to quickly figure out how I was going to walk them through the grieving process while trying to navigate my own emotions. Loss is an inevitable part of life, and the intense sorrow that accompanies the loss of a loved one through death or separation is a normal response. These feelings can be overwhelming and confusing for children who don’t quite understand death.

In preparing children for death, it’s important to be honest, explicit and as concrete as possible without providing too much information. After a loss, avoid saying well-meaning euphemisms for death such as, “he’s gone to sleep forever,” or telling a young child that someone, “…was very sick and died,” which can stoke fear of going to sleep or getting sick for children who are very literal in their thinking. It’s best to have conversations that are simple, honest and developmentally appropriate.

Here are four ways to help children deal with death:

1. Have patience.

Children younger than 8 years old don’t typically understand the permanence of death unless they’ve experienced it first-hand. Even when they’ve acknowledged, “So, Grandpa isn’t coming back?” they may ask days or months later when they will see their loved one again. Our brains are designed to protect us. Research shows that young children will only process loss in small chunks of time. Parents often misunderstand this as them being done with the grieving process or not really understanding what’s happening. Although children grieve for short blocks of time, these can occur over very long periods of months or even years depending on the age of the child. It is important to be patient, answer questions as they arise, and pay attention to behavioral cues. Consistency and establishing a routine is the key to making sure your child feels secure during this period of uncertainty.

2. Develop a narrative.

Often, feelings of change or abandonment can surface depending on how close the friend or family member was to the child. Having a story about that person to hold on to allows them more time to fully process the loss as their capacity to better understand death also develops.

Having a narrative also helps kids understand they didn’t do anything wrong and that they weren’t the reason the person left.

In my case, we opted to talk about good memories and how much their grandfather loved them. Now, they will often do something they are proud of and say, “PopPop would have loved to be here for that!” It continues to let him be present and for my kids to stay in a relationship with him. Remember that if you don’t help your children develop a narrative, they will develop their own.

As you develop a story with them, make sure you share your own feelings as well. It’s hard for a child to understand unexpected emotions, but having a caregiver model feelings can be powerful. Children learn well when they have a vocabulary for these feelings and a model for behaviors that are appropriate expressions of grief. Seeing a parent cry can be scary for them but that experience provides a learning opportunity and therapy for you, too. So, sharing that you are okay but sad right now might help children normalize their own feelings.

3. Create a totem.

Children are such concrete thinkers, meaning they have trouble with abstract concepts, so having a tangible object, such as a picture, item of clothing or even a game or figurine from that person can help ease the transition in their absence.

By allowing a child to transfer significance to a lovey connected to a person they lost, they can also grieve in their own time. Creating a scrapbook with memories and pictures can be a powerful way to process loss together in an experiential way. Try making a game of hunting for meaningful items, pictures and items that represent good times.

4. Give children the chance to say goodbye.

You may decide not to expose your child to the funeral and that’s okay. However, it’s important to let them find a way to help them say their own goodbye. Funeral rituals can provide closure for family members and allow us to grieve in community. Consider having a small family memorial that allows your child to tell their passed loved one about their favorite memory, what they loved about them and what they might miss. At any age, this can be cathartic. If you decide to take your child to the funeral, make sure you prepare them ahead of time that a lot of people will be sad but they are there because they all loved the person who passed.

Above all, respect that your child is handling intense emotions the best way they can. If you don’t have the perfect words, just reflect back what you are hearing your child say. The best thing parents can do is be present and empathic.

Complete Article ↪HERE↩!

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Four things you might not know about your digital afterlife

What happens to your data after you die?

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1 Your digital footprint will one day become your digital remains

If a complete stranger were granted access to every scrap of recorded information about you that exists in the world, would they be able to stand up at your funeral and deliver a personal, moving eulogy that captured the essence of you? Thanks to the modern digital world, the likely answer is yes.

If you’re not active on social media, you might think that you’d be leaving behind very little in the way of a meaningful or personally telling digital legacy. Social media, however, are merely the tip of the little toe when it comes to our digital footprints. Anyone who has access to your devices and accounts after you die – including all the material you never intended to share – could tell quite a lot about you.

Formerly ephemeral communications are now comprehensively stored in searchable, time- and date-stamped emails and message threads. Once untrackable movements are logged by our smartphones, smartwatches, and facial recognition technologies in public spaces. Internet of Things (IoT) devices like video doorbells and virtual assistants are filling our homes.

And our internal desires, thoughts, and feelings can be discerned by innumerable others through our search histories, websites we’ve visited, and the documents and photos we store in cloud accounts and our data-storage devices.

Little wonder that the algorithms seem to know us better than we know ourselves – in this hyperconnected and electronically surveilled world, we are constantly feeding them our data.

A 2019 survey found that 1 in 4 people in the UK want all of these data to be removed from the internet when they die, but no legal or practical mechanisms exist for this to occur. There is no magical switch that is thrown, no virtual worms that traverse the internet nibbling away all traces of us when we die.

Physical death does not equal digital death. Our personal data is simply too voluminous, spread too far and wide throughout the digital world, and too under the control of innumerable third parties to simply call it back home to ‘bury’ it.

2 Social media are becoming digital cemeteries

Dedicated digital cemeteries do exist, the oldest being The World Wide Cemetery, founded in 1995, where people can still visit online graves and leave virtual flowers and tributes. Memorial gardens are dotted around the virtual world Second Life.

Many funeral homes now offer online condolence books, and some physical cemeteries even feature graves with digital components such as video screens or QR codes affixed to traditional headstones. Scores of digital legacy companies appear regularly, often going out of business shortly thereafter.

None of these digital cemeteries can hold a memorial candle, though, to the platforms that never intended to become online places of rest in the first place: sites like Facebook, Instagram, and Twitter.

Facebook has been memorialising profiles in one form or another since the Virginia Tech massacre in 2007, after which users pleaded with the site not to delete profiles that had become memorials for the lost.

Scholars at the Oxford Internet Institute have estimated that the number of deceased users on Facebook could be as high as 4.9 billion by 2100. The dead are also mounting up on Instagram, which also memorialises profiles, and Twitter may follow suit. In November 2019, Twitter cancelled an imminent inactive-account cull in response to an outcry from bereaved people who feared the loss of their deceased loved ones’ Twitter feeds.

Social media companies may be actively trying to work out what to do about the data of the deceased on their servers, but dead people’s information is all over the internet, across all sorts of websites and apps. Many – perhaps even most – of the entities that manage our data are not planning well for the end from the beginning, so information can stick around online for an indeterminate period of time.

We should never assume, however, that online is forever. Disappearance of online data is inevitable through deliberate culls, accidental data loss, and companies going bust.

3 People are struggling to make plans for their digital legacies

It’s not only organisations that are flummoxed by what to do about digital legacies. It’s us, the people who are accumulating them. Less than half of adults in the UK have made a traditional will, and far fewer have considered what will happen to their digital one.

In the Digital Legacy Association’s 2017 Digital Death Survey, 83 per cent of respondents had made no plans at all for their digital legacies. A handful of people – 15.2 per cent – had made their wishes known for their Facebook accounts using the Legacy Contact feature. Legacy Contact allows you to appoint a trusted person to manage your memorialised account after you die, and you can also stipulate if you want the account deleted.

Whether instructions left on Legacy Contact or any other online platform would hold up in UK courts, however, is another matter. As in many realms of modern life, this is an area where laws and regulations are not keeping pace with technology. GDPR and the UK’s Data Protection Act 2018 don’t comment on what should happen to the digitally stored information of the dead, who are no longer entitled to data protection.

Service providers are understandably reluctant to hand over account contents or access to next of kin, especially when that’s likely to compromise other (living) people’s privacy.

Laws governing wills and probate don’t help much either when it comes to digital material. To bequeath something to someone in the UK it has to be tangible or valuable, and your social media profiles might not be judged to be either. In addition, you can’t pass on what you don’t actually own in the first place.

You do not own your social media profiles. Even if you’d like to, you cannot pass on an iTunes or Kindle library, since you have only purchased a license to watch, listen or read while you’re alive. The vast majority of your online accounts and their contents are non-transferable: one account, one user.

It may be a while before coherent, enforceable systems are instituted to govern what should happen to the data of the deceased. Until then, the companies to whom we entrust our data when we’re alive largely decide what happens to it upon death and who can access it.

In this legal and regulatory void, we can only make arrangements as best we can. For sentimental and practical material that might be valuable to our loved ones, we need to leave behind instructions for how to access it or – even better – back it up in secure but accessible formats that are not under the control of online service providers. In the not-too-distant future, digital estate planning may be a career all its own, or at least a necessary component of an existing profession.

4 It is impossible to predict how digital legacies will be meaningful to the bereaved

Our expectations that ‘normal’ grief will follow predictable, orderly stages is encouraged by our algorithmic environment. If you type ‘stages of…’ into a search engine, that engine will likely suggestion completion with ‘grief’. If you type ‘grief’, the engine will likely suggest ‘stages of’.

Despite what you and the algorithms might think, however, bereavement is actually incredibly, spectacularly idiosyncratic. Just as every relationship we have in life is unique, each bereavement is particular too. Despite dominating the popular discourse for the latter half of the 20th Century, Elisabeth Kubler-Ross’ famous grief stages – which were actually based upon qualitative research done with dying people, not bereaved people – boast little empirical support.

Across cultures and millennia, people have continued bonds with their dead in various ways, and we cannot predict what digital artifacts will be important in helping a bereaved person feel a thread of connection to those gone before.

For every person that relies upon a memorialised Facebook profile in their grief, there will be another that wishes it would just disappear. A preserved Twitter profile might be an absolute lifeline to friends, but the family might want it removed, perhaps imagining it’s not important to anyone. There is no rule book for what should and should not be important to someone in grief.

An astonishing and unpredictable variety of digital artifacts have been reported to me as being sentimentally significant to bereaved people. The digital recording of her husband’s heartbeat, stored in iTunes on a widow’s phone. The way that a woman’s brother organised and named his files on his laptop, giving her a window into how he thought and reasoned. A spam email from a woman’s deceased friend whose account was hacked – even though she knew it came from a hacker, she didn’t want to erase it, because it was his name in her inbox. A mother’s search history on her laptop, revealing to her daughter what she was thinking about in the last days of her life.

And finally, Google Street View, haunted by those who are no longer at that address. There is dad, watering the front lawn. There is a fondly remembered pet, peeking out the window of the house. There is grandma, sitting on the porch where she always did, waiting for the school bus to bring her grandchildren home. Even Google Earth is full of ghosts.

Complete Article ↪HERE↩!

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Of Death and Dignity

By Michael Dunn

In just four years, four States have passed ‘voluntary assisted dying’ laws to permit doctors to help terminally ill patients kill themselves. In the two remaining States, Queensland and NSW, similar draft Bills await debate. ‘Dying with dignity’ rallies the supporters of these laws. Is it dignified to kill oneself? Is dignity lost in struggling on in pain and suffering? The story of an elderly woman who died from Alzheimer’s dementia offers some answers to these questions.

Of Alzheimer’s, an American doctor wrote more than thirty years ago, in a popular book about dying: ‘There is no dignity in this kind of death’[1]. If you had chanced to walk into the elderly woman’s room, when she lay dying, you would have seen her wasted body unable to eat, drink or move herself, heard her speechless, ragged breathing, and looked at her static eyes. No dignity was on display.

Five years earlier, she lost her wedding and engagement rings. She had worn them every day of her married life. The loss distressed her. They were precious gifts from her husband and a part of who she was. She suffered an indignity. People would look at her left hand and see her as unmarried, or as something worse if they knew she had a husband whose rings she had discarded. Her husband, though often quick to anger, suffered the loss with surprising forbearance, as though extending his dignity to her, to compensate her loss.

Time passed, and she noticed how much longer and more complicated the routines of her life became. She had not read yesterday’s newspaper by the time today’s arrived. She had to go the hairdresser’s just when she was supposed to be making a family lunch. At afternoon tea, her leaden cake bore witness to the ingredient she forgot. Odds and ends of food inhabited the fridge and supermarket plastic bags ran riot in the garage. Disorder was creeping into the home. Suddenly, one Sunday lunch she passed out in her chair. In hospital, they cured the infection that overcame her, but her mind grew noticeably worse. Still competent, she gave her husband and her son powers of attorney and guardianship. This gift of trust, made as her own strength weakened, bound her husband and her son together in a duty for her care, a dignified and elevated role.

Her husband’s spirit steadied her, but his physical strength declined. Some months later, he suddenly became fevered and delirious. She called the ambulance, and they took him off to hospital for treatment. Being alone unbalanced her. Her phone calls became confused. When going out, she kept forgetting her keys and her next-door neighbour had to rescue her. The couple had to move into a care home. She could no longer fill her office as keeper of the home. She lost another dignity.

A photo taken on the moving day shows her, grave and seated, in her strange new room. She grieved at what was happening, but did not fight against it. She missed the freedom and the power to cook and clean. The organised activities and outings meant nothing to her. She wandered, sometimes going into other people’s rooms and taking clothes to wash. One Saturday she wandered out the entrance hall, and ended up confused but in the park she loved to walk in near her former home. A passer-by took her to her former next door neighbour’s place, and the neighbour drove her back to the care home. From that day on, they marked her as a ‘flight risk’, a potential escapee, another loss of standing.

The dignified person bears themselves in a manner that fits the occasion. Every six weeks or so, the family went out to a restaurant. At first, she took care over her appearance and put on her good clothes. Then dressing became confusing, and she mixed her clothes and wore two skirts at once. When going out, her son became her dresser, restoring the dignity she could not put on for herself. A year or so later, going to a restaurant disoriented her so much she could not eat her food. In time, even in the care home, she needed to be fed with all her meals, like a young child.

Her conversation splintered into fragments — some light and meaningful, others random or irrelevant. She soon stopped speaking altogether, a daunting silence that turned away her visitors. Her son recalled the story of a woman in a coma and her daughter who read aloud to her. When the coma ended, she told her daughter that the reading was the thing that kept her sane. So the son read aloud the poems his mother used to read him, and her husband read her stories which he always did so well. The reading broke the silence with a laugh or smile of recognition. She seemed lost to the world at large, but stayed present to her family and her carers. They gave her what she needed — the rhythms of her language, stories in which to dwell and a regularity of life.

The brain instructs the body, so as it perishes the body fails. Even in her eighties, she had walked everywhere. Seeing her smile could not repress the jolt of noticing a carer on each side walking her along the hall. Some months later, she could not walk at all, and spent all day in a chair and bed combined, made for those who cannot walk or hold themselves erect — a ‘princess chair’ they call it to dignify a sad decay. At the end, her epiglottis, guardian of the windpipe, no longer knew the difference between air and food. She could no longer eat or drink without the risk of catastrophic choking.

The vigil began. Morphine eased her pain, gel soothed the dryness of her mouth and nurses turned her body.  Her husband and her son watched and waited. On the sixth day, her husband asked: ’Does she even know I’m here?’ ‘Yes’, the senior nurse replied. ‘How do you know?’ he asked askance. ‘When you spoke, the rhythm of her breathing changed and she became relaxed’, and so it had. On the eighth day, in the morning, she looked at her husband and her son with a glance they knew was hers. In the silence one can miss these little signs the dying person gives to those they love.

Her suffering and destitution gave birth to a community of care and dignity around her. When lost, her neighbour took her in and drove her home. In care, they nursed and washed and fed her. Her husband loved and cherished her, as he promised at their wedding. Her son sought to honour her and guard her interests. A volunteer brought in a friendly dog for her to stroke. A man who cleaned toilets and bathrooms said: ‘The residents are our friends; although we are sad, because we know we will lose them’. In the last days of her life, individual carers would be found sitting quietly with her, sometimes holding her hand.

Now, a darker and despondent care exists for those whose illnesses are terminal. Doctors may prescribe and even carry out the fatal steps to kill their patients, if those patients ask them. Subject to detailed restrictions and procedures, the laws declare this is no crime. Where the laws mention ‘suicide’, it is only to declare its non-existence in this gloomy form of care. The death certificate issued to the family and executor must not record the patient died by their own hand, or with ‘assistance’, but from the disease that was expected to kill them. This untruth ‘protects the privacy of the person (and possibly their family too)’[2]. This privacy also hides the doctor’s role. Dignity means ‘worthy of honour and praise’. Dignified acts are known and celebrated, not kept in shame and secret from the public record.

Helping someone die begins with seeing suffering and wanting it to end. The vet shows mercy who kills a badly wounded animal when no treatment will succeed. The doctor shows mercy who gives morphine to the patient to relieve their pain, despite foreseeing, though not intending, that the drug itself will hasten their patient’s death. If the patient pleads for death and is dying anyway, the extra step of helping of them might seem merciful as well. This extra, fatal step abandons what is just and true. Death is not a personal entitlement. Life arrives without permission and gives no warranties against illness, pain or suffering. We cannot judge our own life’s worth. We have no right to implicate a doctor in a pact of suicide.

Nobody knows in advance what strength they may find in a contest. In many cases, those who seek ‘assisted dying’ do so out of fear. Tasmanian law acknowledges this fact. It says a person is suffering intolerably if, among other things, they persistently suffer from ‘anticipation of the suffering, or expectation, based on medical advice’[3]. Agony, against which the body fights, comes from the Greek agonia  — a struggle for victory. Fear and anguish are the enemies of life that urge sufferers to kill themselves. We are not competent to judge those who kill themselves, but feel a sadness in the life not fully lived. We dignify the runner that completes the race but dies exhausted at its end; we sorrow for the one who quits mid-course. Suicide silences life’s calling and shuts the book, abandons hope and blows out the candle.

Healing and relief from pain, and a promise to do no harm, united the community of medicine. From specialists to cleaners, everyone assumed a unity of purpose.  Together, they pushed death back and moderated pain. Having done so much together, this unity, once reserved exclusively for healing, is broken — causing death is now declared a healthcare practice. A new principality is born, an independent sphere of power, carved out for helping people to their deaths. It brings within its scope doctors, nurses, psychiatrists, pharmacists, those who issue, receive and dispose of fatal drugs, and even interpreters for non-English speaking patients. Public servants issue permits, register practitioners, authorise their training and organise a community of assisted dying practice[4]. Advocates of assisted death get appointed to its boards and offices. Over the past four years, each State has broadly followed the model in Victoria, from 2017, but with some variations that generally made the rules less strict in various ways[5]. The downward slope has slipped.

Let us return to the woman dying with dementia. In her agony, she struggled tenaciously for victory over death. At times she sank so low, her death seemed imminent and then she struggled up for air again. To share in someone’s agony takes on a share of their distress, of their sinking down and surfacing again. Why could she not depart in peace? Could a nurse or doctor help her death along and spare her struggle and the grief of those who mourn? Sharing in distress can confuse one’s motivation. For whom is mercy truly sought: the patient or the keeper of the vigil? The nurses and the doctor owe their duty to the patient, and never, until ‘assisted dying’ was made law, could seek the patient’s death. So they saved the keepers of the vigil from complicity in death. Nobody knows why the dying person struggles on — perhaps they have some task to finish, perhaps they want to show us something or perhaps their destination is not quite ready.

Before dawn on the tenth day, the woman died. The son took the news to his father. The father hugged his son, and all that had ever divided them was reconciled. They went to her room to see her. She looked serene at last. Her husband, not a churchgoer, recited the Lord’s Prayer. A disengaged observer might only see her losses, and say she lost her dignity. Those who loved and cared for her saw much more, because they knew her ways and saw her signs. They lent her strength and dignity which she returned to them in full, a thing no suicide could ever do.

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Reimagining End-of-Life Care During the COVID-19 Pandemic

A team of human-centered designers created Famous Last Words, a toolkit to activate agency and intentional connection during the lonely COVID-19 period

By Allison Fonder

If the COVID-19 era has taught the world anything, it’s that no one is a stranger to drastic change or loss. The early phases of the pandemic in 2020 marked the beginning of an especially frightening time for hospitalizations and death—until somewhat recently, patients with severe COVID-19 had no choice but to enter hospitals alone, many tragically dying after intubation with no family by their side.

When designer and founder of Blumline, Natasha Margot Blum, reflected upon the most urgent healthcare challenge of the pandemic, she gravitated toward palliative care, death, and dying. Designers and volunteers all over the world activated in response to the pandemic. One community of healthcare innovators and human-centered designers formed quickly through a Slack group: the Emergency Design Collective. While there were a number of designers working on critical medical equipment like respirators, Blum and other practitioners began contemplating death and the end-of-life experiences that neither patients nor clinicians desired, but were happening by default due to the rapid acceleration and unpredictability of COVID-19.

In 2020, a storm of tragic stories emerged about emergency medicine doctors being forced to make tradeoff decisions around which patients would receive limited ventilators. In addition, there was a panic around how to store bodies of the recently deceased; these stories ultimately catapulted Blum’s impassioned team into action. Gathering her studio, Blumline, and a group of volunteers from the 2020-formed Emergency Design Collective, Blum went on a search to discover what sorts of contributions to current challenges related to death and family planning could have real impact.

Can we design better discussions around end-of-life experiences?

After some time, Blum’s team decided to focus on creating, as she describes it, a “self-discovery tool” that allowed individuals and their families to have a framework for hard conversations in the context of the pandemic. A tool like this didn’t just feel important as a way to discuss death, but as a way to discuss values and make meaning. As Blum notes, the team’s vision was centered around mental health: “it’s about reevaluating who we are and who we want to be so that we can define our identity, our legacy, and have the most rewarding relationships with the people in our lives while we’re still here.”

The team created the framework for what is now Famous Last Words, a website and downloadable playbook designed to facilitate a discovery process for each participating person, and to learn alongside their loved ones. Blum shares, “we created a delicately sequenced conversation, structured with and toward the core principle of agency. People choose their questions, their co-conspirators—the people with whom they want to embark on this learning journey—and the timing themselves. It’s a three-event series that culminates in tougher ethical questions around care at the end. You can’t ask people to start with the tactical first. Traveling from abstract to concrete, as we do in the design process, is essential.”

The document thoughtfully guides family and friends through questions and reflections on life, defining a “good death”, as well as clarifying needs and wishes. Participants are encouraged to conduct these conversations via Zoom in at least three sessions, and create an artifact of notes and memories that can guide care if health deteriorates rapidly, and create a beautiful record when someone does die.

Rapid prototyping & remote-first conversations

The team also implemented the use of technology like Marco Polo, an app that lets people string together video recordings of themselves with notes in their rapid prototyping process. Platforms like Marco Polo not only allow participants to spend more time ruminating on these deep questions, but they also inadvertently create an ephemeral video log of memories and reflections that vividly illustrate a person’s network of care. In the product’s final form, Famous Last Words is platform-agnostic—whether Zoom, Marco Polo, or WhatsApp works best is up to what’s most comfortable for the group.

Marco Polo is used to answer questions within Famous Last Words and create a living narrative during a prototyping experiment with a group of mothers for feedback (who are concerned about generations above and below them in their families).

The Famous Last Words guidebook helps loved ones navigate critical medication conversations, while also recognizing how these conversations are often stopped in their tracks due to their emotional weight and our discomfort with the topic. As Blum puts it, “The whole premise [of Famous Last Words] is that it’s up to you to own your story. This pandemic offers us an opportunity to activate a culture of intentional agency in a time where many people feel like they really don’t have any. And that feeling of helplessness and hopelessness is one that results in unnecessary, and sometimes undesired care. If somebody doesn’t understand the implications of what it means to choose a ‘do not resuscitate’ versus another form of care, that can lead to a lot of challenges. So we’ve tried to build that in the best way possible to guiding people while allowing them space, time, freedom, and ultimately giving them the stimulus.”

Research

Blum and her team’s work at Blumline starts with research, which was an important tenet for a project as serious as Famous Last Words that also required a quick turnaround. The team’s first step was reaching out to workers on the front lines during the pandemic, people like emergency medicine physicians, hospice and palliative care doctors, therapists, and people who lost loved ones. After those conversations and creating a journey map, Blum said with COVID “it became very clear once you cross the threshold into the hospital, your agency decreases immediately. So clearly, the greatest opportunity space is before that happens, and that means we’re working way upstream.”

Once they landed on wanting to focus on facilitating end-of-life conversations, the team began a series of different diary studies and competitive audits in order to sensitively explore questions like, how should the conversation be structured, with a trained moderator or as a mutually-led group conversation? What is the best way to frame death within a guidebook that addresses it so heavily? After rapid prototyping a number of potential solutions, the team decided to create a document that lived on its own in PDF form so it was as accessible as possible.

The journey map that illuminated the real window of agency in the progression of COVID-19 and hospitalization.

Challenges

With such a deeply contemplative mission, it’s easy to see why it would require a dedicated group of volunteer designers to bring something like this to life—but it brings up interesting questions as to how medical professionals must prioritize aspects of care to treat as many people as they do. Projects like Famous Last Words demonstrate that there’s much more room for designers to intervene and allow space for medical systems to explore deeper questions. As Blum puts it, “health care providers don’t think about care in a reductive way, but that’s the way that our healthcare system works—it is fundamentally structured in a way that doesn’t give us a lot of room to engage in care that doesn’t produce an immediate result, relief of a symptom or a situation, and death, dying, and care just doesn’t fit into a clean, idealized silo at all.”

Famous Last Words’ current solution to this problem is to generate support from one’s own personal connections and curious, like-minded people. Conversations are led by friends and family rather than medical professionals, illuminating the power loved ones have in ensuring a person’s death is handled with care. Blum says “There are so many amazing care providers, but a lot of care and certainly a lot of decisions happen in non-transactional, peer-to-peer moments. We don’t have economic structures or incentives to manage care the way we’d ideally want to, but that’s where community organization comes in, and support from pioneers like end-of-life doulas, and radically innovative remote palliative care.”

Famous Last Words guides people to explore the origin of their beliefs around death and dying, introducing a range of provocations and stimulus to spark creativity.

This project serves as a helpful reminder to us all, especially in these fragile times, that it’s crucial to band together as a community to care for our own. Secondly, it’s more important than ever to engage more with the concept of death, and make conversations around what we want for our own end-of-life experience easier. “We’re all going through this together and so it doesn’t make sense to narrow down to a very specific design audience when everyone is thinking about their mortality. That’s why we solicited perspectives from people who had family members or loved ones who were very resistant [to that conversation] so that we could understand how to soften the tone and soften the perception of confrontation,” Blum said. And of course, the team aimed to give the topic the meaningful weight it deserves. Dan [Tuzzeo, design researcher and content strategist] put it beautifully: “it was important to strike a balance between normalizing the conversation while still respecting the subject matter—and the people having the conversation.”

With the delta variant creating yet another curve in this saga, this is still just the beginning of an opportunity to embrace a “re-design your life” mindset, rethinking what life is, and what kind of healthcare and dying experiences are possible.

For anyone who wants to uncover their own values, legacy, and boundaries (which is everyone, the team hopes) while engaging in a meaningful conversation about life and death, Famous Last Words is a great resource—you can access the Famous Last Words playbook here.

Complete Article ↪HERE↩!