Tag: Death Talk

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Waking the dead a balm to the grieving process

Thanks to the kindness of fantastic friends and neighbours, we gave ‘Nan’ a great send-off

In some rural areas, the practice of watching over the recently deceased from the time of death to burial is still followed.

By Muiris Houston

[A]s this is an Easter column, I thought I would share some recent reflections on death. Easter is a Christian holiday that celebrates the belief in the resurrection of Jesus Christ from the dead. In the New Testament, the event is said to have occurred three days after Jesus was crucified by the Romans and died in approximately 30 AD. Although a holiday of high religious significance in the Christian faith, many traditions associated with Easter date back to pre-Christian, pagan times.

I hosted my first wake recently.

It was for my mother-in-law Marie, a lovely woman with whom I enjoyed 40-plus years of friendship and a shared sense of humour. Almost 94 when she passed away peacefully surrounded by her grandchildren, there was never any doubt that we would wake her in our home, which she shared with us for a decade or so.

The origin of the wake may date back to the ancient Jewish custom of leaving the burial chamber of a recently departed relative unsealed for three days before finally closing it up, supposedly so that family members would visit in the hope of seeing signs of a return to life.

We were introduced to wakes for the first time after moving to the west of Ireland. Until then, our funeral experience had followed the more urban tradition of an evening removal from hospital or funeral home to a church, followed by a formal service the following morning. But in the rural area we live in, the practice of watching over the recently deceased from the time of death to burial is still followed. I have come to appreciate how a wake is an important part of the grieving process.

Thankfully, the more raucous alcohol-fuelled wakes of Irish folklore are no longer with us.

Marie was brought home to us by the Burke family, our local undertakers. She had been embalmed and looked great when the coffin was opened in her living room. Thus began a two-day wake. At no time was she left alone, with family and friends taking it in turn to sit with her throughout the nights – an important part of the waking tradition.

Unbidden, neighbours appeared with chairs, flowers, sandwiches, soup tureens, cooked chickens and salmon. Cyclical pots of tea and coffee emerged from the kitchen. There was no fuss and soon we felt shrouded in a welcome, slow-moving blanket of grief.

At one point I jumped up, concerned about traffic building up on our country road. I needn’t have worried – some neighbours were already directing traffic around our house as those paying their respects came to visit.
No one is invited

No one is invited to a wake.

If you knew the deceased or know any member of the deceased’s family, you should consider attending. The atmosphere is unique. Memories of Marie triggered both crying and laughing as people paid their respects. Groups formed around us and beyond us. Prayers were said. Some people stayed 10 minutes. Others were with us for hours.

There is no formula for a wake.

Things happen spontaneously, but slowly. And this, I think, is key: rather than rushing through your grief you are transported with it at a natural pace. It is hugely comforting as the deceased’s life is remembered and treasured.

Another advantage to having a wake is it allows relatives who live far away time to get home. My son travelled from western Canada; he appreciated being able to spend an entire night sitting with his granny before her burial.

Wakes may not suit every person and every family circumstance. Private, low-key funerals have their place, too. But waking someone close to you – literally staying “awake” to watch over them – seems to set up a soothing of the grief to follow.

Along with fantastic friends and neighbours we gave “Nan” a great send-off.

Thank you everyone.

Complete Article ↪HERE↩!

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Death is changing — can the Catholic Church change with it?

With cremation on the rise, cemetery space dwindling, and cryogenic freezing around the corner, the Vatican is facing some tough decisions.

By Leah Thomas

[T]he Catholic Church preaches the importance of following ritual, especially when it comes to burial practices. It stresses that, if possible, one’s whole body should be buried in a Catholic cemetery after carrying out a traditional Catholic funeral service, which involves the wake, the funeral mass, and the final interment prayer at the gravesite. If it was good enough for Jesus, reasons the Vatican, it’s certainly good enough for everybody else.

But in 2018, choosing cremation over full-body burial is so popular even Catholic priests are planning to skip out on classic casket burials. “I haven’t signed up for it yet, but yes, that’s what I will do,” said Father Allan Deck, a priest and professor of theology at Loyola Marymount in California.

“I think it’s a bit more practical,” he continued, laughing. “It’s easier to move the cremated remains around than it is a coffin, right?”

Cremation is prevalent now more than ever, with over half of Americans opting to be cremated rather than having a standard burial. And this percentage is projected to reach 78.8 by the year 2035, according to the National Funeral Directors Association.

Whether the Catholic Church felt pressured by the decreasing number of standard burials or by its own priests choosing the alternative, the Vatican released a statement in 2016 outlining the church’s new, more relaxed stance on cremation and the handling of cremated remains.

The new guidelines clarified that while cremation is acceptable, full-body burial is still preferred in order to (hopefully) emulate the Easter Day resurrection of Jesus Christ. “In memory of the death, burial and resurrection of the Lord, burial is above all the most fitting way to express faith and hope in the resurrection of the body,” the document stated.

“More and more of our funeral services are with cremains rather than with coffins,” Father Deck said. “It goes up every year, and the church has tried to respond to it in a constructive way, indicating certain things that should be observed if at all possible, like that cremated remains be put in one place, either in a cemetery or a mausoleum.”

The Vatican’s statement also made it clear that cremated remains, or “cremains,” should not be scattered, divided up, kept in one’s home, or preserved in mementos, pieces of jewelry, or other objects. But why is it so necessary for those ashes to be buried?

“The preservation of the ashes of the departed in a sacred place ensures that they will not be forgotten or excluded from prayers,” said Andrew P. Schafer, Executive Director of Catholic Cemeteries of the Archdiocese of Newark.

“We’ve had situations where homes have been sold and the next buyer finds an urn with human cremated remains in it simply because as the generations passed on, the family forgot about that person,” Schafer recalled. “And so it’s important to remain part of the Christian community and to be buried properly so you will always be remembered, especially in prayer.”

The fear of being “forgotten or excluded from prayers” derives from the church’s belief in the concept of purgatory, which is described as a post-death cleansing process where prayers from loved ones and other Catholics can pass a soul into heaven. If one’s body or ashes aren’t in one place — particularly a Catholic cemetery — they may not be remembered. The person may not receive prayers in their name. And they may never leave the eternal waiting room that is purgatory.

Catholics also stress the importance of burial in completing the church’s funeral traditions — traditions they maintain allow families to heal and grieve properly.

“There’s something psychological about bereavement and loss, and there’s a beauty that we offer with a funeral ritual,” said Peter Nobes, Director of the Catholic Cemeteries of the Archdiocese of Vancouver.

The funeral rituals Nobes is referring to being the three parts of the traditional Catholic funeral service.

“Rituals are important, particularly when there’s a loss in the family. Avoiding things, not wanting to do particular things or not spend money on a particular thing or cut corners here or there, can all be harmful to the family’s grieving process,” Nobes said.

But some attribute the rise in defying Catholic traditions to the high costs of Catholic traditions.

“You’re supposed to get buried in a catholic cemetery, which is also an income generator [for the church],” said Norma Bowe, a Kean University professor who teaches a course called “Death And Perspective.” She added, “I just have to wonder: are they continuing this tradition so that they’re still making money? Because it’s expensive to die.”

She’s not wrong. The average funeral, including embalming and burial, rings up to around $11,000.

The Catholic Church’s mandated burial practices not only present the issue of cost but have also led to a separate issue of cemeteries running out of room.

By the year 2030, the average baby boomer will reach age 85, increasing the death industry by 30 percent, according to the International Cemetery, Cremation & Funeral Assocation. Moreover, individuals over 80 years of age are less likely to choose cremation and more likely to opt for a full-body burial, according to the National Funeral Directors Association, further contributing to the space issue that Catholic cemeteries are attempting to alleviate without defying traditions.

Catholic cemeteries are beginning to feature “green burials,” or eco-friendly burial pods that recycle into the earth over time.

Other cemeteries are “doubling-up” — or placing the cremains of an individual inside an already used burial plot.

The rules for doubling, tripling, and quadrupling-up vary by region and diocese. In Nobes’ diocese, for example, up to three cremated remains are allowed to be buried inside one traditional full-body burial plot.

Some Catholic cemeteries are building up, rather than down.

“Many of our Catholic cemeteries have been building mausoleums for years now,” Schafer said. “So we’re kind of using the dead space above the cemetery — no pun intended.”

The Catholic mausoleums resemble that of the illustrious above-ground cemeteries in New Orleans, created as an adaptation to the city’s swampland rather than lack of burial space.

The rise in cremation is somewhat helping to alleviate the space issue, as cremated remains take up a significantly less amount of space than full body burial plots. Cremation “niches” can be as small as 12 inches square, according to Schafer.

Bowe, a Catholic, has faith that the church will eventually allow for more choice when it comes to what one has done with his/her ashes.

“I see the church changing,” she said. “I see them embracing folks they haven’t embraced before. Religion serves the people, so they have to think in terms of what the people want.”

When it comes to other modern death practices (or death avoidance practices) the Catholic Church is taking a stronger stance.

“People think they’re going to be frozen or do things to prevent death,” Father Deck said in regards to cryonics, or the practice of freezing bodies in order to potentially be revived in the future with scientific advancements. “But no one in human history has ever avoided death. Even Jesus died on Easter.”

Father Deck went on to clarify that while the church does believe in combating diseases and other health epidemics with medical research and advancements, it does not believe in preventing natural death.

“Death comes to us all. And as Christians we believe that the hour of death leads to the hour when we begin eternal life with the lord,” Father Deck said.

Regardless of Catholic burial recommendations, Bowe still plans to be cremated and have her ashes scattered.

“We have a cabin in New Hampshire that’s been our family retreat for years. I pick blueberries off an island that’s right in the middle of the lake,” Bowe said. “And that’s where I want to go. I want to be among the blueberry bushes. And I don’t think that makes me less of a Catholic.”

Complete Article ↪HERE↩!

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You’ve Detailed Your Last Wishes, but Doctors May Not See Them

By DANIELA LAMAS, M.D.

[T]his is not how it was supposed to happen.

I was working overnight when my pager sounded, alerting me to an admission to the intensive care unit. I logged on to the computer and clicked on the patient’s chart, scanning the notes that tracked his decline. First there was a cancer diagnosis, too far gone for cure, then surgery, recurrence, surgery, and finally, a discharge home. The elderly man had been found there earlier that evening, pale, feverish and too confused to communicate.

Now he was in the emergency department, his breaths ragged. “There’s no family around. We’re probably going to have to intubate,” the emergency room doctor told me when I called him to learn more about the patient. I sighed, wondering what this man would have wanted, if only he could tell us.

I was surprised when, a few seconds after I hung up the phone, one of the doctors in training tapped me on the shoulder and pointed urgently at the computer screen. There was something important there at the very end of an otherwise unremarkable progress note from the patient’s outpatient oncologist. Just a few weeks before, doctor and patient had talked about how they were at the end of the road, without further therapies to slow the growth of the cancer. Facing a prognosis on the order of months, the elderly man had requested that when things got worse, there would be no breathing tubes or chest compressions. Only comfort and quiet.

But now he was unable to speak for himself. Too busy with X-rays and ultrasounds and medications, the emergency team hadn’t seen the note. I sent a page off to the attending taking care of the patient to alert him to the patient’s wishes, and my resident gathered his papers to run down to the emergency room.

This patient had done everything we could have asked. He’d been brave enough to talk with his doctors about his cancer and acknowledge that time was short. He had designated a health care proxy. But there he was, surrounded by strangers, the intubation he never would have wanted looming and the record of that conversation buried in his electronic record.

Something had gone wrong. And though it would be easy to blame the oncologist for not sending the patient home with a legally binding directive documenting his end-of-life wishes, or the emergency doctors for not searching harder in the chart, it’s not that simple. As it usually is with a surgery performed on the wrong side of the patient’s body or a medication that’s prescribed despite a known allergy, the problem here is not about individuals, but instead about a system that doesn’t sufficiently protect patients from getting care they do not want.

Increasingly, doctors like me are trained to have frank, hard conversations with our patients about prognosis and care goals. Outside the hospital, people with serious illnesses are encouraged to discuss these issues with their friends and family. But what happens after?

It’s tempting to assume that if you tell one doctor what you want at the end of your life, that’s enough — what you want will be clearly documented and retrievable when it is needed, and the record will follow you wherever you go. Yet this critical information is sometimes not documented even when conversations do happen, or scattered through our electronic records, only intermittently accessible (and often only with time-consuming searching), with few standards or best practices to guide us.

For the past year, I delved into the unexpectedly interesting world of advance care planning and electronic health records, interviewing clinicians with on-the-ground experience recording and retrieving these conversations and representatives from the companies behind some of the most widely used electronic records.

As a doctor working in the I.C.U., I knew firsthand the frustrations of searching the electronic record for notes and scanned documents. But I had no idea how common this problem was.

Through my interviews, I heard stories of patients who had been transferred to nursing facilities without their advance directives and returned to the hospital intubated when that was explicitly not what they wanted. Others told me about patients of theirs who’d grown ill on vacation only to end up in a hospital they’d never been to, with an entirely different electronic medical record, where no one was able to access any prior documentation. Others described situations in which last minute “saves” through extreme diligence or chance, such as the one I experienced, had led to a good outcome.

There are few existing regulations here, as the Centers for Medicare and Medicaid Service are relatively silent on advance care planning. In contrast to the rules around allergies, which mandate that all patients have an active med allergy list, electronic records simply need to have the capacity to show whether or not a patient has an advance directive, somewhere. They don’t even need to make the directive retrievable.

In the absence of nationwide standards, there’s significant variability among hospitals and among electronic records. Some have worked to make end-of-life documentation more easily accessible. At my hospital, for example, clicking on an “Advance Care Planning” tab will bring you to a record of all advance care planning notes, health care proxy forms, scanned directives and code status orders. This is a start, but it wasn’t enough for that elderly man in the emergency room. Habits are hard to break, and without a clear set of incentives, training and ongoing education, doctors (myself included) continue to record information about end-of-life conversations in progress notes, where they are not readily available, particularly when they are urgently needed.

Recently, a handful of start-ups have stepped in, trying to offer a solution to the fact that different electronic records can’t communicate with each other. There’s software and clever patient apps that work outside the electronic record, promising to build a repository of directives, proxy forms, even conversations. Just imagine, your E.D. doctor is fumbling to find your information in your chart, but you have an advance directive that was safely uploaded onto your smartphone. This most likely could have helped my patient that day — if he had a smartphone and was able to show it to his doctors, or if his hospital had committed to buying the necessary software.

What could really make a meaningful difference, I heard time and time again, is standards for sharing, or “interoperability” across all electronic records that would benefit every patient, everywhere. At least, all related advance care planning documentation should be in one place in the medical record and accessible with one simple click of the mouse. Beyond that, maybe all health systems could require identification of a health care proxy for all patients, so we would know who should make decisions if the patient can’t. Maybe patients should be able to access their health records through a patient-facing interface, send in their own directives, or even update related notes. Ideally, the electronic record isn’t just a clunky online version of a paper chart but actually a tool to help us do our jobs better.

Yet as it is, we’re playing catch-up. Which is how my patient ended up in the hospital that night, with a team of well-meaning doctors readying to do something to him that he never would have wanted, and a resident racing down to the emergency room because he’d happened upon a note.

When the resident arrived outside my patient’s room, he was relieved to see that the elderly man was still breathing on his own. The E.D. attending had held off. The patient’s family was on the way. Up in the I.C.U., we treated him gently with fluids and antibiotics and oxygen. He never did get strong enough to make it back home, but I think he was quiet and comfortable in the end, as he had wanted.

At the time, that felt like success. But looking back, I realize that we were just lucky — and that’s not enough.

Complete Article ↪HERE↩!

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

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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How the world of death and funerals has become fashionable through digital culture

‘Tearleading’ – the process of publicly sharing condolences after someone famous has died – has become an internet phenomenon. It’s made grief trendy and has digitised the only one true certainty in life: death

Public mourning: Céline Dion pauses at the casket of her late husband René Angélil – his funeral was livestreamed

By Oliver Bennett

[I]t’s one of the more blood-curdling things about Facebook – the social media death notice. You know the score: the recently deceased star of Top of the Pops, sitcom or stage is commemorated by way of a YouTube video and a deluge of weepy RIPs and “part of my life” eulogies, a phenomenon derided as “tearleading”. The high-water mark for this was who “taught us how to live, then taught us how to die” two years ago. 

Of course, entrepreneurs have noticed this spectacle, which writer and psychologist Elaine Kasket brackets as “the data of the dead”. It’s part of a digital-led revolution in dying and death and it’s changing the way we see people pass into the ineffable digital afterlife. “We’re developing an entirely new mentality about death and dying,” she says. 

​Kasket (yes, she knows) is the author of an upcoming book about digital death called All the Ghosts in the Machine, and has observed a huge rise of interest. “I was at a recent SXSW festival and was introduced to someone who put on a super-serious voice and told me: ‘I’m in the death-tech space’.” As a subject, dying has become fashionable, with investors pouring money into startups, bolstering thought leadership and inspirational TED Talks on “new ways to think about death”. 

There are so many new death-tech sites that they break up into different types. There’s the price disruptors like Harbour Funerals, Beyond.life, and Funeral Zone, which offer price comparisons and sometimes, TripAdvisor-type reviews. Derrick Grant set up Willow when a close friend couldn’t afford his funeral expenses and found one-sixth of Britons struggle to pay for a funeral – the average cost of dying is £8,905. He now offers an against-deadline price check to help those who “couldn’t afford to die”: the ultimate poverty. “I found the industry hadn’t changed for 100 years,” says Grant. “People thought you had to pay a lot to do right.” Now it’s becoming more transparent, more open, and partly as a result, says Grant, “funerals have become less funereal”.

Starman: tributes at a Bowie mural in Brixton the day after the announcement of his death

Then there are the planning sites, which include Cake, a US company that has developed an app for end-of-life planning, and the UK’s DeadSocial.org which explains how to prepare your digital estate from the scattered confetti of Instagram, Facebook, Gmail et al. On SafeBeyond, users can create an online cache – including video and audio messages – to be shared posthumously with loved ones which founder and chief executive Moran Zur has called “digital relics” and “emotional life insurance”. My Last Soundtrack will develop your end-of-life Spotify playlist. More than half a million people die every year in the UK, and market analyst IBISWorld says the UK funeral sector is worth £1.7bn. No wonder there’s been significant funding from angel investors in that “death-tech space”.

This stuff enthuses Peter Billingham, a celebrant and “digital death adviser” who founded the website Death Goes Digital. “The world of death and funerals has really been disrupted by digital culture,” he says. “What was stable for hundreds of years has changed enormously in the last five years. We’re more open about death than ever before and technology is helping to reframe what death means.”

Baby boomers, now moving into the death demographic, are leading the way. Milestones include the 2016 livestreaming of funerals, including those of Lemmy Kilmister and Céline Dion’s husband René Angélil; and of course Bowie, who as ever in the avant-garde, favoured a direct cremation, where the body is cremated before the funeral. There’s a growing inventiveness in eco-death options too: recomposition, where the body becomes compost, and aquamation, a kind of a water cremation – even a “mushroom burial suit”. There are death celebrities, notably Caitlin Doughty, a “mortician and activist” who founded “death acceptance” collective The Order of the Good Death, spearheading the “death positive” movement.

But it is the tech spiritualism that is perhaps the most fascinating part of the digital death otherworld. Many readers will recognise the curious and unsettling scenario whereby a dead friend or relative pops up zombie-like on Facebook, perhaps in a prompt to recognise a birthday.

Modern trend: Dave Grohl delivers a speech at Lemmy Kilmister’s televised funeral

This has led to a huge leap in the way we approach the afterlife. In the past, says Elaine Kasket, attitudes to the dead divided into two main global tendencies: cultures of memory, and cultures of care, roughly zoned into west and east: in China, for example, there’s a tradition of believing that one’s ancestors remain active, while here we honour their memory with photographs and grave visits.

“Now, with digital culture the dead are becoming more vocal and socially influential and the West is moving towards a care culture,” adds Kasket. “They are increasingly in the places of the living.” Digital representations of dead persons won’t be confined to cemeteries. They will haunt different spaces: perhaps even become a rights lobby: the “transdimensional”, perhaps. They will be what Kasket calls the “active dead”, and what Billingham calls “present not absent”. Many people have online conversations with the dead on Facebook, which introduced a legacy contact option in 2015, and Billingham says that we’re already seeing the emergence of a new kind of professional: the “posthumous legacy curator”.

There are far reaches of death-tech that encroach upon sci-fi. Eternime, founded by MIT fellow Marius Ursache, is about creating an eternal posthumous avatar: animated by your digital footprint and given life by artificial intelligence, and is building a database of like-minded people who gain the chance for grandchildren to interact with their unmet great-grandparents. Also in the US, Muhammad Aurangzeb Ahmad, a computer scientist and specialist in personality emulation, is engaged in a project to create simulations of the dead people so as to keep our loved ones “alive”. These avatars will start on the screen, move into virtual reality and augmented reality, then potentially become life-size simulations. Ahmad, who was inspired to work in the area when his father died, sees it becoming reality between 2030 to 2050. “It’s not if, it’s when,” he says. And to those who say it sounds like Black Mirror: well, go back and have a look at the “Be Right Back” episode. 

Open-ended: a woman in ‘Black Mirror’ gets an AI version of her husband after he died

Ahmad thinks that cultures like Japan, with its animist traditions and a neophilic acceptance of robots, will be the early adopters. But he doesn’t see why (bar a few surmountable religious barriers) it shouldn’t take hold everywhere as we become used to it. “It means my daughter will have the chance to interact with my father,” he says. “It will deepen our relationships with our dead loved ones and offer a living memorial that can bring ‘emotional enrichment’.” We’ll be less likely to visit graves, perhaps, and more likely to summon Gran like a digital Doris Stokes.

Of course Ahmad has critics. “People bring up the idea that we need ‘closure’,” he says. “But it goes towards solving the ‘if only I’d said this or that’ problem to an extent.” Still, he concedes there are plenty of legal and ethical issues. What if the simulation were sanitised, with difficult opinions edited out? How should their ageing be represented? Does their voice sound right? Ahmad thinks that the development of digital trusts will emerge, and with artificial voice synthesis, the latter will get better. “But these are uncharted territories. It will affect the way we see identity. Adding emotions may be a challenge.” Will Death 2.0 bring on unintended consequences? It’s a dead cert.

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Learning how to think about death changed how I live

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.

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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:

[P]eople 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.

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Coming to terms with the end of life

by Penny Heneke

[B]eing 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.

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