3 ways advance care planning empowers people

By Lauren Gruber

As we age, health care and quality of life become more important. Making an advance care plan enables patients to consider their health care options, provides directions for caregivers and gives patients as much control as possible during end-of-life.

National Healthcare Decisions Day on April 16th, which seeks to inspire, educate and empower the public and providers on the importance of health planning, is a prime opportunity to consider enrolling in an advance care plan.

Identifying the right caregiving plans may seem daunting at first, but it’s important that patients solidify an advance care plan for the security and peace of mind of themselves and their loved ones.

Here are three ways why choosing an advance care plan through the VNA can empower patients to ensure the best care possible during their health care journey:

1. Build a system of support for all patient health needs.

Advance care planning is essential for anyone, but especially for those experiencing a difficult diagnosis and for those who find it difficult to talk about their end-of-life needs. However, advance care planning may often feel confusing to many people who are unsure where to start.

Luckily, the VNA provides the education and support needed to understand everything they need to know throughout the entire planning process. A nurse practitioner and licensed clinical social worker meet with patients at their homes to evaluate their health needs and assist in educating patients and loved ones on available services and options that may be available to them. Patients can rest assured that the VNA’s Advance Care Planning team provides a planning experience that is as seamless and easy to understand.

2. Maintain freedom when choosing a personalized advance care plan.

When it comes to planning for the final stages of life, it’s important that patients have control and feel confident their wishes will be honored. Advance care planning offers freedom of choice and active participation in optimizing a patient’s care routine. Health planning is also essential for any patient dealing with a disease or injury to understand the full scope of their healthcare goals and make proactive decisions ahead of hospice or end-of-life care. The VNA also offers an Individualized Advance Care Plan, which is free to download online and helps patients personalize their care plan or initiate conversations with physicians and family members.

3. Secure the future for patients and loved ones.

Advance care planning allows patients to plan proactively and feel more secure in their health care options. The Advance Care Planning team discusses care goals with patients and ensures that everyone understands every available option during end-of-life or hospice care. In addition to identifying their goals, the team helps plan advance directives for patients, which outline the type of care a patient expects to receive if they are unable to speak. 

Additionally, the VNA’s Five Wishes® platform, a user-friendly legal document template written in everyday language, helps patients officially plan, document and communicate how they hope to be cared for in the event of serious or terminal illness. This critical step allows family and caregivers to understand exactly what the patient wants. It also helps patients feel secure in expressing their desires for medical and legal matters, along with personal and spiritual concerns. The platform also ensures patients meet legal requirements for an advance directive in 42 states.

Empowering patients should always be a priority during advance care planning. Understanding the process and how it can help patients and caregivers make the best decisions in the last stages of a patient’s life can help them transition with dignity in a comfortable and supportive environment that benefits everyone.

What we owe trans youth when we grieve them

— How do we mourn people we’ve never met, yet feel inextricably connected to? How do we honour the dead without appropriating their stories?

By Kai Cheng Thom

It wasn’t supposed to be like this. It’s an absurd thought that feels almost shamefully naive, but it keeps returning to me as I search for the words to open this piece. It was not supposed to be like this. We are not, in 2024, supposed to be living in a world where young people are losing their lives to transphobia and bigotry. The first time I wrote an essay for a newspaper about a murdered trans youth was over ten years ago, when I was a youth myself, and I suppose a part of me never thought that I’d still be doing it a decade later.

Yet here we are: Still trying to pick up the pieces, to speak about unspeakable losses in a way that feels meaningful. Still trying to answer questions that feel unanswerable: How do we mourn people that we’ve never met, yet feel inextricably connected to? How do we honour the dead without appropriating their stories? All the while, around us, the roar of anti-trans moral panic grows louder and louder, pervading social media and political discourse, building to a fever pitch.

Trans communities have been flooded with deeply disturbing news about violence toward youth and children over the past several weeks. On March 17, a 21-year-old trans man named Alex Franco was shot to death in Utah. A few days earlier, on March 21, the district attorney of Tulsa County had announced that no charges would be filed regarding the death of Indigenous non-binary teenager Nex Benedict, who reportedly died of suicide following a physical altercation during which they were allegedly attacked by three fellow students in a bathroom in their public high school.

In moments like this, I feel the impulse to lean into familiar stories, the instinctive urge to fall back on a world view predicated upon victims, villains, the longing for retribution. This is the only language that this culture has given me to make meaning from the unspeakable. Perfect victims, unforgivable villains, justice in the form of stronger laws and prison sentences. Is this what I am to believe in? Like many trans people, I came so close to being one of the youth who died too young. It’s so personal and so painful. I understand the move toward oversimplification—yet I cannot believe it serves the dream of a more just world for children to live in.

Back in February, the news of Benedict’s death sent shock waves of grief and outrage through queer and trans social networks, following closely on the heels of a trial in the United Kingdom of the murderers of a 16-year-old trans girl named Brianna Ghey. The trial revealed that Ghey’s killers had been shockingly brutal, stabbing her 28 times with a hunting knife after luring her to a meeting in a park. Each one of these horrifying events is in itself a terrible loss, a complex and painful story that deserves its own remembrance. Taken together, they have become inextricable from the larger narrative in which as trans people find ourselves presently entangled: a social panic that exploits us as scapegoats and political pawns—and that ultimately results in real violence against us. Trans people, and especially trans children and youth, have become a wedge issue exploited by populists and profiteers who know that the best way to whip up support from their followers is to give them an enemy to unite against.

Canadian Conservative leader Pierre Poilievre demonstrated this time-honoured strategy when he declared last month that “biological males” (that is, trans women) should be banned from public facilities such as change rooms and washrooms designated for women. So did Oklahoma education superintendent Ryan Walters when he appointed notoriously anti-trans TikTok influencer Chaya Raichik to serve on a media advisory committee for the state school library system—a move that many queer and trans journalists and media commentators have cited in reporting on Nex Benedict’s death, given that Benedict lived in Oklahoma.

Politicians like Poilievre and Walters are undoubtedly aware of what they stand to gain from taking such public stances against trans rights: support from a growing and extremely vocal “gender critical” movement that has taken hold in many conservative and centrist circles. For people like them, the war over trans rights might be strategic or ideological, a series of battles in a larger culture war.

Yet for the families of trans and gender-diverse children, and for trans people themselves, the impact is immense and personal beyond measure. Bombarded with stories of violence, death and loss, surrounded by an inescapable and seemingly incessant debate about trans human rights, we are a population engulfed in collective trauma.

Trans people have been culturally associated with violence, early death and false accusations of sexual perversion since long before Nex Benedict, Alex Franco and Brianna Ghey were born. While it goes without saying that each of these youth was a unique individual with a unique life story, it is impossible for many—perhaps most—trans people today to engage with those stories without immediately connecting them to a litany of other, similar stories of friends and loved ones and community members ripped from us before their time. To remember them is to feel each of their names like a punch in the gut.

It seems that to live as a trans person in 2024, nearly a decade after the so-called “Trans Tipping Point,” still means carrying the weight of a collective trauma that mainstream society does not understand and refuses to perceive. If there is a cultural stereotype that trans communities are overly prone to radical activism and political confrontation, perhaps this is why: We are drowning in the narratives of dead friends and dead children, and it is psychologically and spiritually unbearable. How could we not demand justice?

“It is frighteningly easy to make martyrs out of the dead, to turn them into political symbols when in fact they are people.”

In the wake of tragedy, it only makes sense to respond by calling for a world in which such things never happen again. Yet there is always something about this impulse that is confusing and complicated, that makes the writer in me falter where my activist self wants to rush forward.

It is frighteningly easy to make martyrs out of the dead, to turn them into political symbols when in fact they are people. This is especially true of children who have died under violent circumstances. Conservatives and transphobes do this all the time, weaponizing the notion of childhood to forward adult agendas—this is in fact a key element of transphobic and homophobic political campaigns where, for example, sex education or queer literature are banned in the name of “protecting kids.”

Queer and trans advocates and writers can do better, by refusing to give in to the temptation to make martyrs of our dead youth—by resisting the temptation to erase the complexities of their lives and deaths in order to serve our political ends. It would be easy for queer and trans advocates to project our own life stories on to young people like Benedict, Franco and Ghey, and understandably so. However, it is essential that we also remember them as individuals with interior lives that most of us can only guess at. They aren’t poster children in the struggle for trans rights. They were and are so much more than that.

Public grieving and public mean-making call for a commitment to complexity, a commitment to honouring the full humanity of those we grieve—even when their stories do not align perfectly with our preferred narratives. For example, there has been much pushback in some parts of the queer community over whether Nex Benedict died by suicide or as a result of injuries sustained in the attack he suffered, which were fuelled by ambiguities in the autopsy report—several head injuries were listed in the document, but according to the report, Benedict’s cause of death was a lethal combination of antidepressants and antihistamines. The truth is important. Yet I must ask: Would it not be equally tragic, equally deserving of a call to justice, either way? Would we mourn a death by suicide any less? Surely not.

Some might argue that Benedict was bullied to suicide, which certainly seems like a distinct and terrible possibility that must be considered. A commitment to complexity means that we cannot be sure of the answer, and I believe that staying in the question is a part of honouring his humanity, because Benedict is worth grieving without having to know for certain why he died. The loss of his life, and everything he could have been, is unbearable regardless.

It is also important to observe how in the surge of justified anger over transphobic violence directed toward children, progressive movements can be inclined to call for accountability and protective measures that are not aligned with progressive principles—and that may actually result in greater harm to trans children and youth overall. In the wake of the sentencing of Brianna Ghey’s killers, for example, the U.K. media has largely chosen to focus on covering her mother’s campaign for greater restrictions on and monitoring of youth social media and cellphone use. As Eli Cugini and Ilya Maude reported for Xtra, such initiatives could potentially be devastating for trans young people living in abusive families.

An even more emotionally fraught, yet extremely important, question is how we are to understand calls for perpetrators of violence against trans youth—who are often youth themselves—to face criminal charges and prison time? Is this the meaning of justice? I cannot believe that this is the case. Writer and Xtra columnist Jude Ellison S. Doyle seems to agree, writing recently in his newsletter: “[J]ustice doesn’t mean blood, and it doesn’t mean vengeance. It means making sure that Nex Benedict’s life matters.”

What does it mean to make the lost life of a child matter? In the first place, it bears saying that it always matters. In the second, it means reflecting deeply on the structural factors that allow such unthinkable things to happen so frequently in the first place—factors like the lack of universal mental healthcare and under-resourced public schools, like a political system built around cronyism and cheap culture war pandering rather than meaningful public participation and the collective good.

A queer view of the world invites us to reach beyond the punitive impulse, to ask ourselves if the call for revenge really serves our intention of breaking the cycle of harm. Does putting people in jail, expanding the power of the criminal court, protect young people from violence? I do not think so, because violence is not an individual problem. It is a systemic one that requires systemic solutions.

We are not supposed to be living in this world. Brianna Ghey and Alex Franco and Nex Benedict were never supposed to die in it. They deserved a better world—and so did all the queer and trans youth who came before them, all the queer and trans youth still alive today, and all those coming next. Let us honour them by building a better one.

Complete Article HERE!

As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

Complete Article HERE!

Illness and death are facts of life

– Buddhism teaches us to be mindful but not fearful of it

‘It doesn’t take a deep understanding of Buddhism to acknowledge that sickness, old age, and death are inevitable facts of life.’

The art of developing a healthy relationship with our own mortality lies in neither avoiding the reality of suffering nor obsessing over it

By Nadine Levy

Over the last year, I have spent a lot of time eating pre-packaged sandwiches in hospital cafeterias. I often joke that those of us who are lucky enough to hit 35 will have at least one, if not multiple, serious health scares every year. At some point, however, we will face much more than a simple scare – serious illness can impact anyone, any time, with little notice.

As well as being a source of stress, pain and discomfort, unwanted health diagnoses have the radical potential to upend our lives and ignite burning questions relating to impermanence and human suffering which we may not have considered in the past. We may come face-to-face with our shared vulnerability for the first time – which was present all along – as well as the indisputable fact that we are all but one breath away from a health crisis or poor prognosis.

Working with our mortality in a meaningful way can be challenging. For one, we live in a death-averse culture in which comforting and life-affirming ways of thinking and talking about illness and death are rare. Further, the unprecedented nature of Covid-19, as well as an increase in self-diagnosis via the internet (“cyberchondria”), has been associated with an overall rise in health anxiety.

In the founding story of Buddhism, the historical Buddha, a sheltered 29-year-old prince, ventures out of his palace and for the first time encounters sickness, ageing, and death on the streets of what is now Nepal. These sights impact him in such a visceral and immediate way that he is compelled to relinquish his wealth and material comforts to enter a life of asceticism, contemplation, and reflection.

It doesn’t take a deep understanding of Buddhism to acknowledge that sickness, old age, and death are inevitable facts of life. Many of us know this intimately. However, we may not realise that the more we deny this truth and cling to a fantasy of perpetual health and youthfulness, the more we suffer.

This is not to dismiss our attempts at living a healthy lifestyle that prevents ill health. Indeed, moderation and cultivating physical and mental wellbeing are at the heart of Buddhist practice. Still, we face the cruel irony that even our best efforts to address risk factors through diet, exercise, and supplementation, often fall short. Mark Twain once said, “I take my only exercise acting as a pallbearer at the funerals of my friends who exercise regularly.”

On my first overseas trip as a child, I witnessed individuals with debilitating and treatable illnesses in plain sight. One afternoon, I went to a cafe for lunch and couldn’t swallow my sandwich. As hard as I tried, I could not force the muscles in my throat to perform their job. There was a lump in my throat that persisted. The sharp edges of the human condition had suddenly shifted from theory to reality.

I encountered Buddhism a few years later and I was relieved to find an approach that did not look away from what was true: the body deteriorates, decays, and changes. It is made up of the elements and is of the nature to sicken, age, and die. While death is certain, the time of death is uncertain. Do not turn away from your mortality.

Later, I downloaded an app that reminded me daily I was going to die, though I’m not sure I needed the reminder.

Was this a type of exposure therapy that would liberate me from my worst fears, or was it simply making my anxiety worse?

Years later, I confided in a Buddhist teacher about my ongoing health anxiety, and he said something that changed the way I now view the Buddhist practice of death contemplation: the art is not to be anxiously fixated on death but simply mindful of it. The invitation was to extend a gentle and curious gaze to our fear of death itself. This seems a subtle point, but one that has enormous significance.

First, it invites us to bring awareness to how we relate to and perceive our impermanence. What is it that scares us exactly? The psychotherapist, Irvin Yalom talks about death and health anxiety being a placeholder for a range of natural existential concerns – from fear of pain, loss, and separation from loved ones to terror of our ultimate annihilation. At times, it correlates with deep disappointment that our life has lacked meaning or purpose.

Once we become familiar with what “health” or “death” represent in our unique psyche, we can bring attention to when and how these fears present themselves. Do particular sensations, memories, or emotions trigger these fears? Are they felt predominantly in the body or in a mind that races and tries to fix and control? Do you find yourself reaching for your phone? Instead, can you remain in the here and now, with a racing heart, lump in your throat, images of a poor prognosis, or your final breath? Can you stay put and allow the fears to arise, change, and dissipate? The practice is to avoid the extremes of obsessing about the finitude of our life on the one hand and avoiding our mortality on the other. Acceptance and wisdom lie in the place in between.

You and I will die. Can we stay steady in our seat knowing this with certainty, while remaining open to a broader indescribable mystery which may well outperform our wildest expectations?

Complete Article HERE!

We’re all going to die someday.

— Toronto ‘death cafés’ offers a new way to get comfortable with that fact

Death-care practices vary according to culture and religion and many death doulas argue that in western cultures there’s still a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.

“We’ve heard the saying that it takes a village to raise a child. That village is equally important at the end of our life as it is in the beginning.”

BY Christine Sismondo

After more than a decade living side by side on a quiet street in Toronto’s east end, Fiona* and her partner Lorraine* had become close friends with their neighbour Tony.

“Lorraine and Tony talked all the time,” said Fiona. “When he started getting older and lived on his own, she helped him with errands and grocery runs. I mowed his lawn.”

When Tony was diagnosed with inoperable cancer in 2018, Fiona started cooking for him and filling in when support workers and nurses weren’t on duty.

When it came to preparing to die, though, the couple decided Tony needed more help than they could offer.

They enlisted the help of a death doula: someone who is trained to help with emotional and physical support as well as education about the end-of-life process.

In the last couple of days of Tony’s life, Fiona slept on the couch next to his bed. The doula and Lorraine sat with him until he died.

What struck Fiona as most remarkable, she said, was the “ceremony of it all.” Lorraine and the doula washed Tony’s body and sat with him for hours after he passed.

“I think, in a lot of western cultures, people don’t want to hang out with a person’s body after they’ve gone,” she said. “This felt like helping him to move on and there was a level of comfort in it that helped all of us.”

Death-care practices vary according to culture and religion, and many doulas argue that in western cultures there’s a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.

That started to change 20 years ago with the first “death café,” an initiative launched by a recently widowed Swiss sociologist named Bernard Crettaz. The concept — usually a scheduled group discussion about death among people from all walks of life (not to be mistaken for grief counselling) — has since spread and evolved.

“Now there are ‘death salons,’ ‘death dialogues’ and ‘death book clubs,’” said Kayla Moryoussef, who works with Toronto’s Home Hospice Association and has her own practice, the Good Death Doula. “There’s even a ‘death over drafts’ thing where people meet in bars to drink and talk about dying and death.”

Probably the biggest change to the death café model in Toronto has been that, pre-pandemic, the Home Hospice Association’s death cafés were held in bricks and mortar spaces. When the pandemic forced the cafés online and they no longer had to worry about venues and attendance, it allowed the association to offer more niche programming, such as cafés for parents, pet lovers caregivers and “spoonies” (people experiencing chronic pain).

“I came up with the idea for a spoonies death café because, as a person with chronic illness and disability, I know my relationship with dying and death is fundamentally different than my peers, — especially peers my age,” said Moryoussef, who is now in her late 30s.

The mission at the Home Hospice Association is to offer distinct programming for different communities in the name of accessibility and equitability.

“The reason we even got into this death doula training, development and mobilization was because we could see that our health-care system was not going to be able to keep up,” said Tracey Robertson, a doula and co-founder of Toronto’s Home Hospice Association.

Even if our health-care system could bounce back from its current state, most medical training is about finding cures, and many doctors receive little or no training when it comes to talking about death.

“We’ve all heard the saying that it takes a village to raise a child — we always say that village is equally important at the end of our life as it is in the beginning — some may even say more important,” said Robertson.

Death cafés are part of the foundation for that vision, she explained, because you can only build that village after death is normalized and communities are more comfortable talking about it.

“All it requires is for all of us to just get a little bit more comfortable with the fact that we all are going to be there one day,” said Robertson. “How can we help our neighbour who is faced with the reality of sitting in a doctor’s office and hearing words none of us ever want to hear?”

Complete Article HERE!

The Day Ram Dass Died

— He taught me to be more curious, present, and self-loving. His final lesson was more surprising.

By Christopher Fiorello

I woke up every thirty minutes the night before Ram Dass died. Stretching my perception through the big divider that separated his study—where I lay on a narrow couch—from his bedroom, I’d count the seconds between the short, ragged breaths churning through his sleep-apnea machine.

Four years later, I still have no idea why I was chosen to watch over him that night. I was at the bottom of the caregiver pecking order when it came to things directly related to Ram Dass’s body. I lacked the size and strength to transfer him from bed to wheelchair, or wheelchair to recliner, on my own; was too much of a novice to help organize his schedule or coördinate with his doctors; and was too unfamiliar to offer intellectual comfort in the rare moments that he wanted to talk. I’d met him ten months earlier, had his voice in my head for just three years. There were people in the house, on Maui, who had known him for more than three decades.

Before arriving, I had no formal medical training, but I had done three weeks of volunteering at a hospice facility in anticipation of coming to the island. Most of it involved moving Kleenex and changing the amount of light in empty rooms. Several times I sat with the dying. It was overwhelming to look at their closed eyes, feeling the heaviness in the room, the sense of something happening or about to happen. I scanned their faces for signs of pain, of fear or bliss, of transcendence. Through the palliative haze of opioids, they were impossible to read. No one was thrashing in pain; no one was smiling, either.

But it somehow buoyed me, being so close to death. The heaviness seemed critically important to my spiritual growth. I imagined myself giving peace to the dying through my presence, and in the process conquering my own fear of leaving life behind.

During my time with Ram Dass, I flitted constantly between self-righteousness and self-pity, one day indulging in grandiose fantasies that I was the heir to his legacy, charged with scattering his ashes, and the next imagining that everyone in the house hated me. The caregivers called it the classroom or the fire—a site of purifying work, a pathway to enlightenment.

My own work, purifying or otherwise, consisted mostly of handling various chores needed to keep a six-bedroom cliffside home with a pool, guesthouse, and two-acre yard going. For the bits that mattered—the scrubbing and the laundry and the cooking—there was a team of cleaners and a rotating cast of chefs. I ended up doing a lot of the rest: separating recycling, washing dishes, and replacing cat-scratched screens. There were three other caregivers in the house, and I was given a modest salary, plus my own room, meals, and shared access to a truck. I was an employee, but most days the house felt like a family, for better or worse.

Still, this was only the second time I’d been asked to spend the night in the study. It was generally perceived as an act of intense devotion: accepting a horrible night’s sleep, on a couch that reeked of cat pee, while facing the prospect of Ram Dass dying on your watch. I hated it, but I was there to care for the guy however it was decided that he needed care.

Most of the deciding was done by a woman affectionately dubbed Dassi Ma, a seventysomething lapsed-Catholic firecracker from Philadelphia. Dassi Ma was Ram Dass’s primary caretaker, and, though she no longer did the more strenuous physical tasks, she was still in command of what he got and when, often more so than Ram Dass himself. He was eighty-eight, and his health had been steadily deteriorating owing to a host of issues, including chronic infections. When I moved to Maui to be near him, in February, 2019, he had almost died the night I arrived. He bounced back, to everyone’s surprise but his own. “It wasn’t time,” I remember him saying in his stoic way, neither relieved nor disappointed. Now he had another spreading infection, and what appeared to be a cracked rib from being transferred to and from his wheelchair.

Ram Dass’s life is the subject of multiple documentaries, an autobiography, and a docuseries in development starring “High Maintenance” ’s Ben Sinclair. He was born Richard Alpert in 1931 to a wealthy Boston family. His pedigree was sterling: a Stanford psychology Ph.D., tenure track at Harvard, visiting professorship at Berkeley. In 1963, after five years at Harvard—much of it spent studying psychedelics with his fellow-psychologist Timothy Leary—he was fired for giving psilocybin mushrooms to an undergraduate.

He bopped around for a few years, often taking obscene amounts of mind-altering substances with Leary at the Hudson Valley estate of his friend Peggy Hitchcock. In 1967, like so many other Westerners of the time, he travelled to India in pursuit of exotic answers to life’s biggest questions. He’d grown disenchanted with the psychedelic world, which had come to seem rotely defined by highs and comedowns. In India, he met a Californian hippie named Kermit Riggs and followed him to a village called Kainchi, in the Himalayan foothills, to meet Riggs’s guru.

The guru was an old, squat man named Neem Karoli Baba. Before long, an enthralled Alpert was reborn as Ram Dass, or roughly “servant of God.” He returned to America later that year, arriving at the airport dressed in white robes and with a long, scraggly beard, and began his career as a spiritual teacher. Most of what he talked about, from 1967 to his death, were the experiences he had with Neem Karoli Baba, whom he called Maharaj-ji (“great king”), and the spiritual beliefs that emerged from those experiences.

One of his main ports of call became death and dying. In 1981, he co-founded the Dying Center, in Santa Fe, an organization that described itself as “the first place specifically created to support and guide its residents to a conscious death.” The center sought, in effect, dying people who wanted to use their death to become spiritually enlightened, and staff members who wanted to use other people’s deaths to achieve the same. Even before the Dying Center took shape, Ram Dass was lecturing on the spirituality of death, its place in the natural order, and the starkly contrasting way that he believed it was perceived in the East. His teachings were rooted in a specific vision of metaphysical reality, as informed by his guru and by the Bhagavad Gita, a sacred Hindu text. Roughly, he believed in nondualism, that there existed an unchanging and absolute entity—the Hindu Brahman, which Ram Dass more frequently called God, the divine, or oneness—from which all material reality came. Included in that reality were souls (something like the Hindu atman), which by their nature were caught in the illusion of their separateness from God, repeating a cycle of birth, suffering, death, and reincarnation until they remembered their true nature as part of the oneness—that is, until they became enlightened.

Death could be a crucial moment for remembering this nonduality, as it was when the “veil of separateness” was thinnest. In his 1971 book, “Be Here Now,” which has sold more than two million copies worldwide, Ram Dass summarizes his views: “You are eternal . . . There is no fear of death because / there is no death / it’s just a transformation / an illusion.”

He often spoke to crowds afraid of dying, repeating that he had “no fear of death.” He sat with people on their deathbeds and talked routinely about the power of “leaving the body,” his efforts to “quiet himself” so that the dying could see where they were in the reincarnation process and do what they could to escape it. His stories were sometimes graphic—people dying prematurely, or dying in tremendous pain—but always tinged with a lightness and humor.

Perhaps Ram Dass’s most memorable remarks about death came not from his own mind but from a woman named Pat Rodegast, who claimed she had channelled a spirit named Emmanuel from 1969 to her death, in 2012. Rodegast was working as a secretary, raising children, and practicing Transcendental Meditation when she began to see a light, which evolved into what she called telepathic auditory guidance. Some of that guidance was captured in three books published in the eighties and nineties, two of which came with forewords from Ram Dass. According to Ram Dass, when he asked Emmanuel what to tell people about death, Emmanuel replied that it was “absolutely safe,” “like taking off a tight shoe.”

I first encountered the voice of Ram Dass in 2016. I was twenty-seven and living in New York, in a Chinatown building that rattled every time an empty box truck drove down First Avenue. Each morning, I tumbled down five flights of sticky stairs and placed one of his talks deep into my ears, letting his distinct blend of scientific erudition and spiritual mysticism carry me across town.

He had a habit of segueing from psychological concepts, like attachment theory and childhood trauma, to cryptic ones, like Emmanuel’s messages and the astral plane, pausing briefly to ask listeners if they could really, truly “hear this.” He seemed to build on the insights of others who had revolutionized end-of-life care in America—thinkers such as the psychiatrist Elisabeth Kübler-Ross—but also spoke in the New Age argot of Alan Watts. I gobbled it all up, feeling my spiritual life deepen exponentially by the day. His lectures made me more prosocial, more anti-capitalist, more curious, and decidedly more self-loving.

This was my second rodeo with spirituality; growing up, a rigid strain of Protestantism had been foisted on me like a chore. In Kansas City, Missouri, I was enveloped by an atmosphere of creationism, tent revivals, and anti-abortion screeds. I still recall standing on a busy street as a six-year-old and holding a sign that read “Before I Formed You in the Womb I Knew You—God.”

The teachings of Ram Dass were nothing like that. They were straight out of the hippie movement, and seemed to license a more liberal, self-directed search for meaning. As the grind and filth of Manhattan wore me down, Ram Dass’s voice became a salve, a way to “wake up to the illusion of our separateness.” I turned to his work again and again—to ease my loneliness when, walking down the street, droves of people moved around me like I was a light post, or to arrogantly tell my ex-girlfriend that we would always be “together,” even though I’d already dumped her.

After a couple of years, I learned that I could actually meet Ram Dass, for free, by signing up for one of his “Heart-to-Hearts”—a one-on-one, hour-long Skype call he offered as a sort of public service. When my time came, and the man appeared onscreen, I was stunned into silence. I had thought of him as a spry, ethereal figure who existed only in decades-old recordings. This Ram Dass was very old and lived with fairly advanced aphasia, a side effect of a major stroke he’d had in 1997. His speech was slow—in our full hour, he said roughly sixty words—but not at all ponderous. I thought it gave him a mystical quality.

There was no format to the session; Ram Dass just smiled his winning smile and listened. At one point, after I’d nervously overshared, he told me, “You take yourself pretty seriously.” That struck me as profound, at least at the time, but what endured was more feeling than words. It seemed he had arrived at a place from which he could find genuine love for strangers like me. It didn’t strike me as brand positioning, or as a form of ego; I didn’t think he loved me in the sense that he wanted to be close, or even that he cared whether we got to know each other. I just believed he saw me as another soul, and that, in his view, made me worthy of kindness.

By then, I was walking around New York, trying desperately to feel connected to anything. I wanted what Ram Dass had. So I left the city, intending, among other things, to get him to show me how to have it.

The friend I’d discovered Ram Dass with had already moved to Neem Karoli Baba’s temple, in Taos, New Mexico. I visited him for a fortnight of cooking group meals, wandering through the snowy high desert, and hobnobbing with Maharaj-ji zealots, including one white teen-ager who insisted that he was the reincarnation of Krishna, one of Hinduism’s most revered avatars. Like the young Krishna of lore, he would steal away to the temple pantry to eat pure butter until caught.

Some of this evoked my childhood church, where kids compared how quickly they could transition into speaking in tongues, or flexed the depth of their personal relationship with Jesus while leading a collective prayer. But this was my first encounter with Neem Karoli Baba devotees; I figured followers would be a bit more mellow the farther I got from his temple. Toward the end of my stay, I met a longtime friend of Ram Dass. He saw that I was eager to do volunteer work—known as seva, Sanskrit for “service”—so, when he learned of my intent to find Ram Dass on Maui, he offered to put in a good word to Dassi Ma.

That recommendation made the seemingly impossible possible. People of all ages came to the island to be near Ram Dass. Some found their way into the group texts for arranging kirtan—living-room chanting sessions at Ram Dass’s house—or beach excursions. A few found opportunities to be useful around the house, or made friends with one of the live-in caregivers, enabling them to drop by every week or so. But to be offered to help care for Ram Dass, for pay, as a virtual nobody, was exceptionally rare.

Upon arriving at the house, I found it shot through with the same quasi-religious fervor I had seen at the temple. I was quickly intercepted by another caregiver and taken to a lean-to, in a nearby pasture, so that I could silently meditate with prayer beads. It was incredibly humid, and I got annihilated by mosquitoes. I returned to the house to find a living room packed with people chanting—mostly the Hanuman Chalisa, a devotional hymn that features verses like “With the lustre of your vast sway, you are propitiated all over the universe.” A collective effervescence filled the room, and I joined along, staring at hundreds of statuettes of religious figures while fighting back the sense that I was in church.

After more than an hour of chanting, we milled about, greeting one another over chai and snacks. Attendees swapped stories of Maharaj-ji’s miracles, told me that my presence must be part of his plan, sat smiling at Ram Dass’s feet, their hands over their hearts. During my year on Maui, Ram Dass’s foundation led retreats at a local resort, where hundreds of people would gather for spiritual talks and chanting. Inevitably, someone at these events would look at me with confusion or pity when I told them my name was Christopher. “He hasn’t given you a name yet?” the person would ask. Ram Dass often bestowed a Hindu name on people: Lakshman, Govinda, Hari, Devi. I was fine with Christopher.

But there were other moments, informal and fleeting, when I witnessed the mixture of play and profundity that first drew me to Ram Dass. One autumn morning, two other caregivers and I were helping him get through his daily routine—brushing teeth and hair, putting on clothes and hearing aids, making the bed—when I turned on Doja Cat’s “Go to Town,” a song I later learned was about cunnilingus. I cranked the volume, and the four of us started dancing with illicit glee. One caregiver jumped on the bed, another swung from the divider between the bedroom and the study, and Ram Dass waved his one mobile hand with bright eyes and a rascally smile.

Another day, I was alone with Ram Dass, helping him pick out a shirt. Though I spent nearly all my time in the house, I could count the hours we had been alone together on two hands, and most of them had involved food and drink, or foot massages, ostensibly to relieve the pain that he felt from diabetic neuropathy. On this day, the house was recovering from Ram Dass having been denied psilocybin owing to his health. I felt sorrow for him; the drug was, after all, the beginning of his spiritual journey more than five decades prior. I asked him if the house ever felt like a prison. A full minute of silence passed, with me standing over him in his walk-in closet. Eventually, he tapped his temple and said, “This is the prison.”

When morning broke on December 22, 2019, and Ram Dass was still alive, I allowed myself a moment of relief. Dassi Ma came up, looking short on sleep, and took his vitals. They were horrible. We snapped into action, trying to comfort Ram Dass until one of his doctors arrived.

The infection had pooled fluid in his lungs, which made every breath a burden. Wet, rattling half-breaths were punctuated by coughs of bloody mucus. He looked wrecked, but still managed a weak smile when his Chinese-medicine doctor told a joke at his bedside.

At some point, Dassi Ma and the doctor began talking in the study; other caregivers were on an oxygen-tank-and-essentials supply run. I was on one side of Ram Dass’s bed; on the other was his longtime co-author Rameshwar Das, a friend since Kainchi. Then Ram Dass started choking.

It wasn’t that different from any of the other horrible breaths he’d taken that morning, except that he just couldn’t breathe it. When he realized this, he turned to me with a look that haunts me even now: light eyes wide as quarters, mouth open, lips a bit rounded. I immediately panicked, calling for Dassi Ma and trying to get his adjustable bed as upright as possible so that he could clear his throat. Then, when that didn’t seem upright enough, I frantically tried to lug his torso up so that his head could hang over his waist; perhaps he could vomit his throat clear.

Thirty seconds had passed since he first lost his breath. Somewhere from near his feet, the doctor snapped at me: “You have to calm down!” It jolted me into an awareness that Ram Dass was dying, right there. Perhaps it did the same for Dassi Ma, because she sprang for the study, returned with a large framed photo of Neem Karoli Baba, and commanded him to focus. “Ram Dass! Maharaj-ji! Maharaj-ji!” she said, placing the photo at the foot of the bed. She told him that she loved him, that he could go. I told him that I loved him. And then Ram Dass stopped trying to breathe.

I was the only person to leave the room. Stumbling into the study, I picked up my phone, hands quivering, and sent word to the other caregivers: “RD’s dying imminently. Like within the next couple of minutes.”

The wind was screaming outside. On Maui’s North Shore, it wasn’t unusual for it to reach thirty, forty knots, rattling the windows and throwing palm fronds across the lawn. That day, it had blown from early in the morning, under a tightly woven blanket of gray clouds. Sitting in the study, I watched it bend the trees, felt the violence of it, indiscriminate.

Ram Dass believed that fear kept us from recognizing our interconnection to all things. “Change generates fear; fear generates contraction; contraction generates prejudice, bigotry, and ultimately violence,” he said. In his teachings, he often placed fear and love on opposing sides of the human experience. Fear was the by-product of the ego; love was the by-product of the soul that remained pure, in the moment, especially at the time of death. “When we are fully present,” Ram Dass wrote, “there is no anticipatory fear or anxiety because we are just here and now, not in the future.”

And yet this binary is precisely what made watching him die so disorienting. I’ve no idea what Ram Dass felt in those final moments, what he could see or hear. I don’t even really know if that was fear I saw in his eyes, though it certainly looked like it. Perhaps it was surprise or another sensation entirely, the rush of emptiness before a huge plunge into something tremendous.

Whatever it was, its existence seemed largely absent from his teachings. There were times when he acknowledged the pain and coarse brutality of death. In his book “Still Here” (2000), he writes:

Dying is often not easy. the stoppage of circulation and starving of the heart muscle. the inadequate transport of oxygen to tissues, the failure of organs. Where can we hope to stand in our own consciousness during such traumatic conditions, in order to die with clarity and grace?

Yet the emphasis he placed, over decades of lectures, on the importance of grace during death made so little space for terror—for how fear could coexist with presence, and even with love. In the minutes after his passing, the chasm between how he died and how I thought he was supposed to die reminded me of the betrayal I’d felt when, at sixteen, I flouted my mother’s and pastor’s admonitions and stopped asking God for protection, only to discover that a similar slew of terrible and wonderful things still happened to me.

In the house, too, marching through three days of death rituals before Ram Dass’s body was removed, I felt my spirituality slip its moorings. Late on the second night, his body lay on ice in his study—a rite he’d specifically requested, hoping that it would help those around him transcend their fear. I sat on the floor and peered up at his face through candlelight, his skin whitish blue and gaunt, his mouth slightly agape. I waited for grace, for him to speak reassuringly from some other plane of reality. Instead, I was taken back to our final moments together, where fear sutured me to each passing second. Not fear of the past or some uncertain future, but fear of the vast, strange intensity of what is.

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How will you be remembered?

— Here’s how to adopt a ‘legacy’ mind-set.

Howard Kaplan, 56, wrote a “life letter” to his two daughters as part of his legacy.

Building a legacy — which benefits others and will survive beyond your lifetime — encourages you to think deeper and longer term

By Katherine Kam

As you think about which goals to pursue this year, consider one with lasting impact: building a legacy.

“What do I want to leave the world? How do I want to be remembered?” said Lisa Marchiano, a psychotherapist in Philadelphia. “When we think in terms of legacy, we’re really trying to use our imagination to think far beyond our own individual existence.”

Short-term goals such as starting a new hobby or saving money for a special vacation can be valuable, but a legacy mind-set requires different considerations. Building a legacy — which benefits others and will survive beyond your lifetime — encourages you to think deeper and longer term, experts say.

Legacy building does not have to be a grand project, it can be a simple one that speaks to your strengths and values. Some examples include:

Legacy building does not have to be a grand project, it can be a simple one that speaks to your strengths and values. Some examples include:

In this black and white photograph, Howard Kaplan, in a dark suit, faces a large wall, and his shadow is seen next to him.
Howard Kaplan wrote a digital “life letter” to his two daughters. Reflecting on his own values, goals and life lessons benefited him, too, he said: “It was a gift for myself.”
  • Start a collection of recipes of favorite family dishes to give to younger relatives.
  • Support an organization that does vital work.
  • Mentor a youth who needs guidance and a mature perspective.
  • Leave your life lessons in story form for your loved ones or community.
  • Create scrapbooks and photo albums, clearly labeled with added written accounts, so memories won’t be forgotten.
  • Research your ancestry and create a family tree.
  • Use your talents to create a new family heirloom, for example, a wood sculpture or furniture, a painting or a piece of pottery.
Howard Kaplan, far right, with his daughter Sarah to his left, wife Stephanie next to Sarah, and his other daughter Hannah, next to Stephanie.
Howard Kaplan — seen here with, from left, his daughter Hannah, wife Stephanie and daughter Sarah — wrote a digital “life letter” to his daughters as part of his legacy.

Howard Kaplan, a financial adviser in Cincinnati, comes from a tightknit family, a legacy, he says, he inherited from a maternal grandmother who prized extended kin gatherings.

As part of his own legacy, Kaplan, 56, wrote a digital document he called a “life letter” for his daughters, Hannah, 25, and Sarah, 22.

Reflecting on his own values, goals and life lessons benefited him, too, he said: “It was a gift for myself.”

“I wanted to tell my story,” Kaplan said, to let family and descendants know “why I made certain decisions and how I became who I am.” His family is close, but he had not expressed his thoughts to them in such a way, he said.

Among the top lessons for his offspring: Life is hard. “Not that that’s bad. It’s just the way it is,” he said. “There is no easy bus that’s coming for us, so we’re all going to have to work hard.”

>But he was also creative and playful. Kaplan loves music, he said, from Beethoven to AC/DC. He paired his life letter to his daughters with a playlist of 42 songs that hold meaning for him. His favorite: “Family Affair” by Mary J. Blige. “The beat is amazing,” he said, but he’s also drawn to the lyrics: “We don’t need no haters. We’re just trying to love one another.”

Volunteer and work legacies matter, too

You don’t need to have children to embrace a legacy resolution. For example, you can support or volunteer at an organization, including one that might outlive you.

Charming Evelyn, 56, grew up in the Caribbean, where conservation was a way of life. Households, including hers, collected rainwater in large storage tanks for domestic use, she said.

“We do not waste,” she said. People reused plastic containers and turned empty cookie tins into sewing boxes. “There was already a level of recycling happening,” she said.

Evelyn parlayed that tradition of conservation and a love of nature into a long-standing volunteer commitment with the Sierra Club, a grass-roots environmental organization. She volunteers as the chair of the water committee for the Sierra Club Angeles Chapter and has worked on issues such as water conservation and depletion of groundwater.

Complete Article HERE!