My husband wanted assisted dying, but was denied.

— It’s only right people should have the option

Paul and Alain on their wedding day.

By Patrick Kelleher

In September 2019, Alain du Chemin was diagnosed with a brain tumour.

At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.

“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.

Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.

Paul (L) and Alain (R). They are sitting outdoors on a bench and both men are laughing.
Paul (L) and Alain (R).

He was a pragmatic person, Paul says, and immediately started researching his options.

“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.

“That’s when he started looking into the whole assisted dying process and what it entails.”

Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.

By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.

One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.

Paul and Alain on a plane on their wedding day. Both men are wearing tuxedos and the plane has been decorated.
Paul and Alain on a plane on their wedding day.

It took a while for Paul to realise just how serious Alain was about dying in Switzerland.

“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.

“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?

“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”

‘Laws must change to a more humane model’

In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.

“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”

While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.

Paul and Alain on their wedding day. they are pictured signing the marriage register in a registry office.
Paul and Alain on their wedding day.

Shortly afterwards, Alain’s condition started to deteriorate rapidly.

“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.

“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”

The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.

In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.

On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.

Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.

Paul and Alain on their wedding day. They are both wearing suits and are standing on a red carpet outside a private jet.
Paul and Alain on their wedding day.

That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.

YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.

“It’s about choice,” Paul says.

“I think it’s only right people should have the option available to them.”

Complete Article HERE!

Talking about the value of death

The Report of the Lancet Commission on the Value of Death, subtitled ‘Rebalancing and Revaluing Death and Dying: Bringing Death Back Into Life’, is a timely, cogent and illuminating foray into an aspect of life that few seem to consider, despite it being the one thing that we have in common – we, and everyone we know, will all die someday.

By Sean O’Connor

The Report of the Lancet Commission on the Value of Death, due for imminent release, is part of a series of publications featuring the collaborative work of a broad and diverse range of academic partners, writers, activists, and others, who investigate the world’s most urgent scientific, medical and global health concerns. Their aim is to assess a prevailing issue and provide recommendations that could change health policy or improve practice.

This particular report, subtitled “Rebalancing and Revaluing Death and Dying: Bringing Death Back Into Life”, is a timely, cogent and illuminating foray into an aspect of life that few seem to consider, despite it being the one thing that we have in common – we, and everyone we know, will all die someday.

The Report on the Value of Death is arresting for several reasons, which benefit from a nuanced understanding of what professor emeritus at Arizona State University and author Robert Kastenbaum has termed “death systems”. These are “the means by which death and dying are understood, regulated and managed”, which Kastenbaum first described as “interpersonal, socio-physical and symbolic networks through which an individual’s relationship to mortality is mediated by society.”

These systems are complex, multidimensional and mutable, not easily changed, and shaped by spectrum of cultural, religious, spiritual, political and legislative practices, which “implicitly or explicitly determine where people die, how dying people and their families should behave, how bodies are disposed of, how people mourn, and what death means for that culture or community.” (The report limits itself to death and dying, and does not examine what happens to the dead.)

“Society and the medical world have considered black lives cheap.”

Death systems, the authors point out, are “not benign”. An afterword by Mpho Tutu van Furth, a South African Anglican priest, author and activist who has lived in the US, provides a corrective to the predominantly white, wealthy and Western perspective that embeds itself in much of the report’s narrative, which the commission is self-consciously aware of.

Writing from her own perspective and not “on behalf of two-thirds of the world’s population” who do not enjoy access to healthcare, she attests to her own experience as a black South African woman and mother to two African American children, picking apart the cultural anomalies she witnessed growing up and going some distance further.

“I saw the white flight from ageing and death,” she writes. “Black people had no illusion we could escape death. Black South Africans did not desire immortality. In death we would be gathered with our ancestors. ‘Going home’ to our forebears was considered the reward for a life well lived.”

This, however, takes place in the context of malevolent racism, both in South Africa and the US. “Society and the medical world,” she writes, “have considered black lives cheap.” She squarely accuses racism as a determinant of death’s value, saying that to “ascribe the correct value to death we must assign the right price to every life”, and provides the example of how Covid has disproportionately affected and afflicted black people everywhere.

Initiated before the current pandemic, the report nevertheless situates itself here, yet looks to the future.

Interestingly, it presents evidence that our collective experience of death during Covid has “further fuelled the fear of death”, instead of the opposite. Daily death tallies and statistics have not normalised death or brought it closer, but spurred further abstraction. Supporting this claim, the report draws attention to the extreme “medicalised death” (for some) that Covid has provided: death that has occurred in the forbidden province of a sealed hospital, staffed by masked and muffled and often stressed personnel, with limited communication between family members. We’ve had more death, but moved it even further away.

The authors note: “The increased number of deaths in hospital means that ever fewer people have witnessed or managed a death at home. This lack of experience and confidence causes a positive feedback loop which reinforces a dependence on institutional care of the dying.

“Medical culture, fear of litigation, and financial incentives contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death. Social customs influence the conversations in clinics and in intensive care units, often maintaining the tradition of not discussing death openly. More undiscussed deaths in institutions behind closed doors further reduce social familiarity with and understanding of death and dying.”

“Death is essential… Without it, every birth would be a tragedy… and civilisation would be unsustainable.”

This experience, reinforcing the pervasive idea of healthcare services as the legitimate and proper “custodian of death”, is a trend initiated generations ago for a bevy of reasons. The authors relay that over the past 70 years, the “shifting role of family, community, professionals, institutions, the state, and religion has meant that healthcare is now the main context in which many encounter death”.

A natural death, in this paradigm, is simply considered as the cessation of medical support, and, according to the social critic Ivan Illich, “dying has become the ultimate form of consumer resistance”. (Similarly, the co-founder of the Death Café movement, the late Jon Underwood, found a strong parallel between death denial and consumer capitalism. We buy stuff to perpetuate the idea of immortality through ownership, to feel alive, imagining that possessions confer meaning to life. Yet even if they last, we don’t.)

The responsibility of healthcare, commonly understood as the prolonging of life and avoidance of death, therefore regards death itself as a failure. At the heart of the report is an urgent and radical proposal – that we unpick and redetermine what medicine should do, and revalue death, recognising that it is not only normal and natural, but valuable, and has much to teach and bestow on us. After all, we were designed to die. We are a part of nature, as the pandemic has reminded us. “Death is essential,” the authors write. Without it, “every birth would be a tragedy” and “civilisation would be unsustainable”.

In rediscovering the intrinsic value of death, lost in the attrition of community skills and experience in care for our dying, and the concurrent emergence of life-saving medical technologies and the outsourcing of death, we are now urged to bring death closer, to talk about it and recognise that it provides an opportunity to build and maintain the relationships that sustain life itself.

In losing death, we lose life.sp;

That death has become rarefied, obscured, mystified and hidden is a core problem, entrenching an imbalance that the recommendations of the report attempt to address in practical terms. The commission (which is how the authors refer to themselves, continually incorporating new members and ideas and inviting participation at every turn) is essentially concerned with the different ways we die, and proposes that death, dying and grief provide an acute lens not just into different death systems but into structural inequality and power dynamics which need urgent attention and change.

For example, women are disproportionately affected by death, and are typically seen as caregivers for the afflicted and dying, spending at least 2.5 times more time than men in unpaid care and domestic work. (In my own group of death doulas and end-of-life carers, for example, I am the only person who identifies as a man in a group of 40 women.)

In addition, widows are routinely stigmatised, in both rich and poor contexts, and commonly denied access to property or assets after the death of a spouse, whose existence often defines their own, and sometimes forced into degrading post-marriage rituals (treated as common family property) or shunned from employment or society. In middle- and high-income environments too, widowhood presents difficult social barriers and loss of status, income and life chances.

We are continually reminded in many examples in this report that the “impact of race, class, gender, sexuality, socioeconomic status, or other forms of discrimination on mortality rates, access to care, or the incidence of diseases or conditions, is well established”. Indeed, inequality is emphatically expressed in the perverse finding that those who receive the most care often don’t need it, while those who need it the most don’t get it. Poor people usually experience poor death. The relatively well-off may attempt some form of inoculation via medical care, but this too tends to have an often poor result. Death could clearly be better for everyone. The authors contend that “most conditions for a good death could be offered to most dying people, without costly medical infrastructure or specialised knowledge”.

At the heart of this paradoxical imbalance, the report locates the prevalence of “overtreatment” at the end of life as a particularly pernicious and often damaging practice and one which consumes a massive proportion of healthcare budgets the world over.

A startling finding is that in the last month of a person’s life, whether in a resource-rich or poor context, a stupendous spike in costs usually occurs, frequently bankrupting surviving family – despite having no positive benefit to the dying, and often increasing suffering.

But perhaps this is old news for people who’ve found themselves in this situation, unable to delimit potentially life-extending treatment, which doesn’t necessarily improve the quality of life at all, for fear of being held accountable for death, or hastening it, and going against the grain of the medical impetus to prolong. In my own experience, I recall the glee conveyed by a daughter and her terminally ill mother who had together decided to abandon the crippling costs of another round of pointless chemotherapy and go on a final road trip together instead.

Medicine’s remit to extend life isn’t appropriate where there is no realistic prospect of influencing life’s quality. While the palliative care movement is fortunately making strong if uneven advances for limiting pain at the end of life, and building models of holistic, integrated and team-based care that includes families to provide support that focuses on improving life’s quality in balance with death’s inevitability, far too many people die of common conditions that could be treated, and with no pain relief.

The World Health Organization reports that only 14% of people needing palliative care receive it. (This is the focus of a separate Lancet Commission report but is frequently referred to here.)

The report, drawing from a deep well of research (all of which is available on the commission’s website) presents fascinating evidence of the frequency of hope and bias as causes of overtreatment, further entrenching the medicalisation of death. Hope, they posit, can encourage confirmation bias, where the subconscious selection of information usually accords with a desired outcome – to stay alive. This racket is often run in collusion with afflicted individuals, their worried families and healthcare professionals alike. Bias similarly expresses itself in treatments recommended with little chance of success, even at any cost.

For example, in a study of 1,193 patients with late-stage cancer, 60% and 80% respectively of those with lung cancer and colorectal cancer receiving palliative chemotherapy “expected the treatment to cure their illness despite the treatment not intended to be curative”. Doctors, meanwhile, routinely show bias in their assessment of the likelihood of curative treatment. Better conversations need to happen, that recognise and are free of fear.

Perhaps this is unsurprising in a system where relationships and networks are replaced with professionals and protocols. In Cape Town, I recently listened to an esteemed city official describe ways to “optimise death chain management” during the pandemic. Psycho-spiritual support and home-based community care were off the radar.

Of several discrete yet overlapping sections in the report, the chapter on “advanced life directives” is particularly convincing as evidence that a positive shift in our death systems can be achieved through a reorganisation of relationships, without much expense.

Considering the level of end-of-life you deem appropriate (such as no insertion of artificial feeding tubes) can form part of a healthy communication between family members, and provide a binding template for your instructions when you may no longer be able to convey them, especially to medical staff. This, the authors suggest, should not be regarded as a “difficult” conversation, but recast as an “essential one”. (Readers might find some assistance here)

It seems like we have lost the ability to talk about death, as though talking about it is morbid, even fatal… We can perhaps embrace the idea that talking about death is good for life.

The report suggests that this conversation is seen as a process rather than an event, and draws from Atul Gawande’s seminal book, Being Mortal, to help frame this. In the context of illness, he asks: What is your understanding of where you are and of your illness? What are your fears or worries for the future? What are your goals and priorities? What outcomes are acceptable to you? What are you willing to sacrifice and not? And later, what would a good day look like?

The consequences of not having these conversations are severe. Having them, on the other hand, can limit suffering and provide pathways to healthy grief and loss that is less complicated than it might be. It seems like we have lost the ability to talk about death, as though talking about it is morbid, even fatal.

The death doula movement, the palliative care movement and other cultural projects promoting awareness of death, such as Death Cafés and the “death positive movement”, are changing this. These have, argues the sociologist Lyn Lofland, even heralded the age of “thanatological chic”. Perhaps this is necessary. For a rebalancing and revaluing of death, the report suggests, entails the active promotion of “death literacy”, which is something we can all learn. Evidence suggests, the report says, “that talking collectively about these issues can lead to an improvement in people’s attitudes and capabilities for dealing with death”. We can perhaps embrace the idea that talking about death is good for life.

This requires more change. The report mentions that until relatively recently, just two generations ago, most children would have witnessed a dead body. Now however, it is deemed some kind of aberration to have seen a corpse, as something remarkable and untoward, even unnatural. Many people in mid-life have never laid their eyes on the lifeless remains of a former co-traveller. We have become alienated from death, treating it as something to be avoided. Indeed, a plethora of scientific, technological, social and even religious endeavours reveal, in their quest for immortality, a possible anxiety that life is somehow insufficient and lacking. This impulse to escape mortal confines raises some profound philosophical, ethical and practical questions, not least of which is a question about access and further inequality. (Mpho Tutu van Furth’s earlier testimony regarding the welcoming return home in death for black Africans is a useful counterpoint, once again.)

Several of these initiatives are briefly described in the report, encompassing a quest to preserve life through anti-ageing techniques and a confabulation of associated technologies, the lasting idea of a magical elixir, uploading a digital mind and memories to the cloud, cryogenics, cloning, the egoistic impulse to create “legacy”, even the belief in an immortal soul forms part of this complex – which, bluntly, is an aversion to physiological death and pulling away from the thing that is most essential to life – our death. The Scottish-born former director of the Institute for the Future, Ian Morrison, is quoted here, joking that “Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.”

Assisted dying, which is legal in Canada, receives broad examination in the report. As it seems likely to become more widespread, according to the authors, and is the subject of increasing debate worldwide, including South Africa, the report provides a refreshing summary of questions about assisted dying that demand further inquiry. These are proposed without the delimiting taint of an imposed morality, which often confounds consideration of this very germane topic.

A similarly dispassionate yet inspired gaze is deployed into consideration of five possible future scenarios for death and dying, as well as an extensive description of the remarkable paradigm shift in Kerala, India (population 35 million) where “dying from a life-limiting disease is a social problem with medical aspects rather than the commonly held converse view”.

The report concludes with a list of recommendations organised into various categories and the enumeration of the qualities required for what the authors describe as a “realistic utopia”, a desired model inspired by the Keralan example, and a way that each of us can work to change the death systems we inhabit.

Briefly, these qualities are: that “the social determinants of death, dying, and grieving are tackled”; that “dying is understood to be a relational and spiritual process rather than simply a physiological event”; that “networks of care lead support for people dying, caring, and grieving”; that “conversations and stories about everyday death, dying, and grief become common”; and perhaps most importantly, that “death is recognised as having value”.

Incredibly, even though death and dying are part of life – an everyday part of life affecting us all, as we are continually exposed to the death of others and live with the certainty of our own mortality, indeed, are embroiled in the twin process of living and dying in every moment as we move from birth – death is not only absent from many medical conversations, but social ones too.

This report encourages the fact that we clearly have much to talk about. Death is part of life, not something that happens at the end of it. Breaking the taboo about speaking about death feels transgressive and can be revelatory.

Revaluing death, as this remarkable report suggests, has the profound ability to make lives better. The philosopher Martin Heidegger, who examined our relationship with death and who is quoted in the report, reminds us that although we may apprehend the death of others, no one else can “die my death for me”. Acknowledgment and contemplation of this ineluctable fact free us to “authentically become who we are” and, hopefully, encourage us to take up the shared responsibility of affording the same value to the death, and life, of everyone who draws breath.

Complete Article HERE!

Experts warn of the increasing overmedicalization of death, call for rethink of how society cares for dying people

Health and social systems around the world are failing to give appropriate, compassionate care to people who are dying and their families. According to a new Lancet Commission, today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life.

The Commission calls for public attitudes to and dying to be rebalanced, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and to care for people dying.

Bringing together experts in health and social care, , economics, philosophy, political science, theology, community work, as well as patient and community activists, the Commission has analysed how societies around the world perceive death and care for people dying, providing recommendations to policy makers, governments, civil society, and health and social care systems.

“The COVID-19 pandemic has seen many people die the ultimate medicalised death, often alone but for masked staff in hospitals and intensive care units, unable to communicate with their families, except digitally”, says Dr. Libby Sallnow, palliative medicine consultant and honorary senior clinical lecturer at St Christopher’s Hospice and UCL (UK) and co-Chair of the Commission, “How people die has changed dramatically over the past 60 years, from a family event with occasional medical support, to a medical event with limited family support. A fundamental rethink is needed in how we care for the dying, our expectations around death, and the changes required in society to rebalance our relationship with death.”

The Commission focuses primarily on the time from when a person is diagnosed with a life-limiting illness or injury, to their death and the bereavement affecting the lives of those left behind—it does not cover sudden or , deaths of children, or deaths due to injustice.

Death and dying have become over-medicalised, hidden away and feared

Over the past 60 years, dying has moved from the family and community setting to become primarily the concern of health systems. In the UK for example, only one in five people who require care are at home, while about half are in hospital (table 2).

Global life expectancy has risen steadily from 66.8 years in 2000 to 73.4 years in 2019. But, as people are living longer, they are living more of these additional years in poor health, with years lived with disability increasing from 8.6 years in 2000 to 10 years in 2019.

Prior to the 1950s, deaths were predominantly a result of acute disease or injury, with low involvement from doctors or technology. Today, the majority of deaths are from chronic disease, with a high level of involvement from doctors and technology. The idea that death can be defeated is further fuelled by advances in science and technology, which has also accelerated the over-reliance on medical interventions at the end of life.

And, as healthcare has moved centre stage, families and communities have been increasingly alienated. The language, knowledge, and confidence to support and manage dying have been slowly lost, further fuelling a dependence on health systems. Despite this, rather than being viewed as a professional responsibility for the doctor, and a right for all people and families who wish it, conversations about death and dying can be difficult and uncomfortable and too often happen in times of crisis. Often they don’t happen at all.

“We will all die. Death is not only or, even, always a medical event. Death is always a social, physical, psychological and spiritual event and when we understand it as such we more rightly value each participant in the drama,” adds Commission co-author, Mpho Tutu van Furth, priest, Amstelveen, Netherlands.

Worldwide, too many people are dying a bad death

While palliative care has gained attention as a specialty, over half of all deaths happen without palliative care or pain relief, and health and social inequalities persist in death.

Interventions often continue to the last days with minimal attention to suffering. Medical culture, fear of litigation, and financial incentives also contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death.

Dr Libby Sallnow and Dr M.R. Rajagopal call for radical rethink of how society cares for dying people. Today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life. The Lancet Commission on the Value of Death provides recommendations to policy makers, governments, civil society, and health and social care systems. Credit: The Lancet

Untreated suffering, vast inequalities, and aggressive medical treatments have come at a high cost. A disproportionate share of the total annual expenditure in high income countries goes towards treatment for those who die, suggesting that treatments at the end of life are being provided at a much higher threshold than for other treatments.

In high income countries, between 8% and 11.2% of annual health expenditure for the entire population is on the less than 1% who die that year (table 6). Care in the last month of life is costly and, in countries without universal health coverage, can be a cause of families falling into poverty.

“Dying is part of life, but has become invisible, and anxiety about death and dying appears to have increased. Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering and enabled a poor use of resources. Healthcare services have become the custodians of death, and a fundamental rebalance in society is needed to re-imagine our relationship with death,” says Dr. Richard Smith, co-Chair of the Commission.

A fundamental change to society’s care for the dying is needed

The Commission sets out five principles of a new vision for death and dying:

1. The social determinants of death, dying and grieving must be tackled, to enable people to lead healthier lives and die more equitable deaths.

2. Dying must be understood to be a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritised and made central to the care and support of people dying or grieving.

3. Networks of care for people dying, caring, and grieving must include families, wider community members alongside professionals.

4. Conversations and stories about everyday death, dying, and grief must be encouraged to facilitate wider public conversations, debate, and actions.

5. Death must be recognised as having value. “Without death, every birth would be a tragedy.”

The Commission recognises that small changes are underway—from models of community action to discuss death, national policy changes to support bereavement, or hospitals working in partnership with families. While wholescale change will take time, the Commission points to the example of Kerala, India, where over the past three decades, death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems.

“Caring for the dying really involves infusing meaning into the time left. It is a time for achieving physical comfort; for coming to acceptance and making peace with oneself; for many hugs; for repairing broken bridges of relationships and for building new ones. It is a time for giving love and receiving love, with dignity. Respectful palliative care facilitates this. But it can be achieved only with broad-based community awareness and action to change the status quo,” says co-author Dr. M.R. Rajagopal, Pallium India, India.

To achieve the widespread changes needed, the Commission sets out key recommendations for policy makers, health and social care systems, civil society, and communities, which include:

  • Education on death, dying, and end of life care should be essential for people at the end of life, their families and health and professionals.
  • Increasing access to pain relief at the end of life must be a global priority, and the management of suffering should sit alongside the extension of life as a research and care priority.
  • Conversations and stories about everyday death, dying, and grief must be encouraged.
  • Networks of care must lead support for people dying, caring, and grieving.
  • Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness to enable more informed decisions.
  • Governments should create and promote policies to support informal carers and paid compassionate or bereavement leave in all countries.

Complete Article HERE!

Medical aid in dying is for preventing a hideous death, not for truncating an unhappy life

Amanda Villegas with her husband, Chris Davis, while he was in hospice care in June, 2019.

By George F. Will

Although Amanda Villegas’s manual dexterity is hindered by her mild case of cerebral palsy, she is a gifted photographer who documented the last five days of her husband’s life with bladder cancer that metastasized. She has posted the photos on Google Drive, under “This is Cancer.” Steel yourself before viewing them. But view them. They ground in reality the increasingly urgent debate about medical aid in dying (MAID).

Chris Davis was 29 when he died at home on June 19, 2019, just a week after doctors belatedly gave him a terminal prognosis. The tragedy of his disease had been compounded by multiple misdiagnoses. The unnecessary horrors of his final days were the result of a hospital’s misinformation — perhaps religiously motivated mendacity — and a restrictive provision of a California law that has been liberalized, effective Jan. 1, 2022.

Speaking recently by phone from California, Amanda said that Chris, who was skeletal at the end, was so drenched in pain that “he would cringe and scream if anyone touched or moved his bed.” He had been told two falsehoods, that MAID is illegal in California, then that it is legal only in Northern California. While he had the strength, he repeatedly screamed “please let me go.” He died with tubes draining fluids from his stomach, kidneys and chest.

California’s MAID law, as enacted in 2015, allows mentally capable adults, with a medical diagnosis of less than six months to live, the option of receiving prescription medication that enables them to die in their sleep. Until amended last year, the law’s eligibility process could take weeks, even months. It included a 15-day waiting period between two oral requests for the medication — a delay that put a peaceful end beyond Chris’s reach.

One-third of those beginning the eligibility process died before completing it. Beginning this year, the waiting period has been reduced to 48 hours, and hospitals and hospices will be required to post their MAID policies on their websites. (New Mexico adopted similar legislation last year.)

The Economist magazine, true to its classical liberal tradition, recently praised “the welcome spread of assisted dying” for advancing a “basic freedom” that is now “legal in one form or another in a dozen countries.”

Worldwide, MAID is generating useful data. A British study found that doctors tend to overestimate – by 500 percent — how long terminal patients will live, often to give those suffering illusory hope. In Oregon, which has had MAID since 1997, a third of those who receive end-of-life medication do not take it but derive comfort from having it at hand. In the 25 years since Oregon became the first state to legalize MAID, only 4,209 people nationwide have used it to assert their autonomy in ending their lives on their terms. Ninety percent died where most Americans say they want to die: at home, often with loved ones.

Kim Callinan, president and CEO of Compassion & Choices, which advocates for MAID, says it “creates a shift within our end-of-life care system from a paternalistic model to one that is resoundingly patient-driven.” Her organization says that “over the past six years, 30 national and state medical and professional associations have endorsed or dropped their opposition to” MAID.

Skeptics understandably warn about a slippery slope: Persons worried about becoming burdens on their families might find the MAID option coming to imply an obligation. So, a doctor mentioning it might inadvertently be experienced as coercive. If MAID is justified by fear of severe pain culminating in death in less than six months, what about informed choices by mentally sound persons gripped by advancing dementia? Or the psychological afflictions of, say, persons deeply weary of life. Are such persons mentally capable?

Crucially, MAID is for those who are already dying and want help — for preventing a hideous death, not for truncating an unhappy life. MAID — the medical management of a natural process — should be considered a supplement to hospice (palliative) care.

Life is lived on a slippery slope: Taxation can become confiscation, police can become instruments of tyranny, laws can metastasize suffocatingly. However, taxation, police and laws are indispensable. The challenge is to minimize dangers that cannot be entirely eliminated from society.

In percentage terms, Americans 85 and older are the nation’s most rapidly growing age cohort. Medical marvels extend, and enhance the quality of, life — up to a point. MAID, enveloped in proper protocols, can and should be a dignity-enhancing response to especially harrowing rendezvous with the inevitable.

Complete Article HERE!

On the Politics of Death

Global events such as pandemics can momentarily focus attention on a fundamentally overlooked pre-existing human condition: the sheer inequality of how individuals in power decide who lives and who dies.

By: John Troyer

Pandemics make ignoring death harder to do. That doesn’t mean government officials and friends alike won’t symbolically look the other way or reflexively stare harder at their phones during mortality spike events. But the longer any act of ignoring continues, the more obvious the avalanche of death being ignored becomes.

Ignoring something is, of course, different than repressing it. We are acknowledging its existence by ignoring it. We see death. We understand it happens. All of us know people who have died. Everyone reading these words will eventually die.

Which brings me to our current death moment.

The Covid-19 pandemic is but one example from a long list of morbidity and mortality events that momentarily exposed the politics of death for everyone to see. And by everyone, I mean the citizens of every single country on the planet who are suddenly witnessing what those of us who work in death full-time already knew: Our leaders regularly choose to decide who lives and who dies.

Now flip that last statement into a question and one can begin to see the genealogical shadow of Queens and Emperors: Who lives and who dies? Thumbs up or thumbs down? These are foundational and urgent questions that confront modern governments with choices to make on any given day but especially so during a pandemic. The early AIDS epidemic remains a tragic illustration of how different governments decided that the queer communities watching gay men die in unprecedented numbers could be ignored until suddenly those same governments were dealing with a pandemic that remains with us today.

Thanatopolitics, or the Politics of Death

Who lives and who dies are clearly not new questions, but global events such as pandemics can momentarily focus attention on a fundamentally overlooked pre-existing human condition: the sheer inequality of how individuals in power answer those questions.

And while it is correct to state that all biological creatures die at a certain point, that dying is hardly universal in how it impacts different communities. What I’m saying may not come as a surprise, but it is important to foreground this information as a way of stating that when discussing death in the modern Western world, we are often discussing the politics of death. Even if people do not realize this distinction when talking about death and dying — and many people, I believe, do not — the ways end-of-life trajectories become discussed focus on the dynamics causing that death to happen. This distinction matters since understanding how a person died — the core causation of the death, especially during a pandemic — is often laden with political questions around access to care, medical ethics, and economic stability.

While death and dead bodies are obviously connected, the politics surrounding each remains unique and should be distinguished from one another.

This death politics can properly be called a thanatopolitics, borrowing thanato for death from the Ancient Greeks and working with both Giorgio Agamben’s and Michel Foucault’s ideas around biopolitics and forms of life.

What this thanatopolitics of who lives and who dies — with a heavy emphasis here on the “dies” bit — is not is the related concept of necropolitics. The latter is a distinct and important idea first suggested by philosopher Achille Mbembe that more accurately describes the politics of dead bodies (the necro in Ancient Greek). The thanato/necro distinction is crucial in everyday circumstances since the politics of death is often described using the necro- prefix — and while death and dead bodies are obviously connected, the politics surrounding each remains unique and should be distinguished from one another. Dead body politics and death politics occupy distinct experiences for the average person, and recognizing the difference between what death is and what a dead body is remains profoundly important for medicine, the law, and everyday decision making in places such as hospices.

In my book “Technologies of the Human Corpse” I devote the entirety of a chapter to discussing precisely these distinctions between the bio, thanato, and necro, since the politics of each remains simultaneously always visible (if you know where to look) and completely hidden. The book manuscript was completed in 2019, before Covid-19, but spends many pages discussing the ways AIDS both impacted and significantly changed how funeral directors handled dead bodies, e.g., personal protective equipment, or PPE, an acronym we’re all sadly familiar with by now.

By discussing the thanatopolitics of the early AIDS epidemic (which is still happening, lest anyone forgets), it is easy to see how the Covid-19 pandemic ticks all the boxes as to what contemporary thanatopolitics relies on: social and economic disadvantages that contribute to higher mortality rates, especially in brown and black communities; hundreds of thousands of people dying entirely preventable deaths in populations that become economically acceptable deaths (e.g., the elderly and disabled); access to life-saving medical treatments that significantly favor wealthy communities and nations, and so on.

Where Covid-19 thanatopolitics morphed into something I had not predicted was when the emergence of what I call virological determinism became the logic that almost every local, national, and global governing body used to lay blame for preexisting societal problems. This is a gloss on technological determinism, the tendency we humans have to blame any “technology” for causing our very human-created problems, and works much the same way. By taking a rapidly-out-of-control pandemic and mixing in contemporary health inequalities and unprepared — and sometimes negligible — political leaders, we in the West ended up in this thanatopolitical quagmire.

I say quagmire, since it is unclear right now if and when any of this will actually be “done” no matter the speed with which people want to move on. But there are lessons to be learned, and in this way, thanatopolitics can be extremely productive and useful.

The politics of death become a way to acknowledge all those who died and what should be done in the future to prevent more needless deaths. One of those key lessons includes governmental leaders both knowing about pre-existing pandemic response plans and then using those plans when responding to a non-stop mass fatality event such as Covid-19. In addition to following the already extant response plans, leaders should continue to update and renew those plans on a regular basis. HIV/AIDS taught the world how quickly a virus could adapt to everything we threw at it. I remain hopeful that we reflect on that lesson in the coming decades.

Understanding how a person died is often laden with political questions around access to care, medical ethics, and economic stability.

On March 18, 2020, I flew on a plane from the UK (where I normally live) to my hometown in Wisconsin to help my parents with some health issues. I did not know it then, but this was one of the last planes to make that trans-Atlantic flight for many months due to the pandemic.

On the flight, I read an incisive essay by Michael Specter in the New Yorker on the cascading failures of the U.S. health care system. It ends with the following prediction that presciently understood the who-lives-and-who-dies thanatopolitics that defined the past 18 months: “The bigger question is whether we will learn from the fact that this [Covid-19] pandemic will kill many more people than it had to. I’d like to think we would, but, if the past is any guide, this pandemic will end with a bunch of new commissions and ominous reports. As soon as they are printed, they will be forgotten.”

We can choose to ignore death and the thanatopolitics that choice brings for future body counts. But if Covid-19 has demonstrated anything it is that we do so at our own peril.

Complete Article HERE!

Mac study looks to help families discuss end-of-life care during COVID-19

By Maria Iqbal

Long-term-care staff are so swamped with COVID-19 protocols that end-of-life discussions aren’t occurring with residents and families, says a McMaster University professor.

Sharon Kaasalainen, a professor in the school of nursing, says she’s hearing from families that they’re feeling excluded from decisions about their loved one’s care.

“Compassionate care is missing because it’s all around public health protocols,” she said, noting the absence of these conversations is causing “serous concerns.”

Kaasalainen recently met with the Ontario Long Term Care Association and other long-term-care leaders to raise the issue. The point of compassionate care, she says, is to help people become more comfortable talking about death and supporting families through that process.

Kaasalainen’s research involves helping facilitate conversations about end of life in long-term care. She recently received funding to adapt her research for COVID-19, including by developing online tools to support those discussions. The goal is to help residents, families and staff prepare for decisions at the end of a patient’s life.

While COVID-19 poses major staffing challenges, Kaasalainen says palliative care also has to do with education and a home’s priorities.

Her study will pilot online tools at homes in three provinces. Locally, that includes St. Peter’s Residence at Chedoke on the west Mountain, where she expects to roll out the online resources in spring.

The tools in the study include pamphlets on conditions common to long-term-care residents to help both residents and families learn what to expect as a disease progresses.

Pam Holliday participated in an earlier part of Kaasalainen’s research. She says the tools taught her to ask care providers more specific questions about the health of her elderly mother, a resident at Shalom Village in Westdale.

Holliday says palliative care conversations can help even before a person’s death. In her case, her mother got sick multiple times, but bounced back.

“You try to make them better, but you try to make them enjoy what they have,” Holliday said about the approach.

She adds that the resources are particularly helpful during COVID-19, when there are restrictions on visits to long-term care.

“We’re totally reliant on staff communicating any changes with us,” Holliday said. “It’s (about) asking the right questions.”

Kaasalainen says care conversations can also include the type of music a person would like to hear when they’re dying and which loved ones are with them. But avoiding the discussions affects the quality of care during a patient’s final days and how families cope after a death.

“We’re seeing families very distressed, having to make decisions unprepared, and it leads to poor bereavement,” Kaasalainen said. “They have these lingering feelings of guilt and stress.”

In March, Kaasalainen is also planning to launch a national community of practice with the Canadian Hospice Palliative Care Association. It would bring together researchers, care providers and families in long-term care to discuss palliative care.

Her hope is to see families involved in care decisions feeling better prepared.

“The goal really is good death, peaceful death and families feeling guilt-free and prepared for death when it happens.”

Complete Article HERE!

Dying in a Leadership Vacuum

Covid-19 has created a crisis throughout the world. This crisis has produced a test of leadership. With no good options to combat a novel pathogen, countries were forced to make hard choices about how to respond. Here in the United States, our leaders have failed that test. They have taken a crisis and turned it into a tragedy.

The magnitude of this failure is astonishing. According to the Johns Hopkins Center for Systems Science and Engineering,1 the United States leads the world in Covid-19 cases and in deaths due to the disease, far exceeding the numbers in much larger countries, such as China. The death rate in this country is more than double that of Canada, exceeds that of Japan, a country with a vulnerable and elderly population, by a factor of almost 50, and even dwarfs the rates in lower-middle-income countries, such as Vietnam, by a factor of almost 2000. Covid-19 is an overwhelming challenge, and many factors contribute to its severity. But the one we can control is how we behave. And in the United States we have consistently behaved poorly.

We know that we could have done better. China, faced with the first outbreak, chose strict quarantine and isolation after an initial delay. These measures were severe but effective, essentially eliminating transmission at the point where the outbreak began and reducing the death rate to a reported 3 per million, as compared with more than 500 per million in the United States. Countries that had far more exchange with China, such as Singapore and South Korea, began intensive testing early, along with aggressive contact tracing and appropriate isolation, and have had relatively small outbreaks. And New Zealand has used these same measures, together with its geographic advantages, to come close to eliminating the disease, something that has allowed that country to limit the time of closure and to largely reopen society to a prepandemic level. In general, not only have many democracies done better than the United States, but they have also outperformed us by orders of magnitude.

Why has the United States handled this pandemic so badly? We have failed at almost every step. We had ample warning, but when the disease first arrived, we were incapable of testing effectively and couldn’t provide even the most basic personal protective equipment to health care workers and the general public. And we continue to be way behind the curve in testing. While the absolute numbers of tests have increased substantially, the more useful metric is the number of tests performed per infected person, a rate that puts us far down the international list, below such places as Kazakhstan, Zimbabwe, and Ethiopia, countries that cannot boast the biomedical infrastructure or the manufacturing capacity that we have.2 Moreover, a lack of emphasis on developing capacity has meant that U.S. test results are often long delayed, rendering the results useless for disease control.

Although we tend to focus on technology, most of the interventions that have large effects are not complicated. The United States instituted quarantine and isolation measures late and inconsistently, often without any effort to enforce them, after the disease had spread substantially in many communities. Our rules on social distancing have in many places been lackadaisical at best, with loosening of restrictions long before adequate disease control had been achieved. And in much of the country, people simply don’t wear masks, largely because our leaders have stated outright that masks are political tools rather than effective infection control measures. The government has appropriately invested heavily in vaccine development, but its rhetoric has politicized the development process and led to growing public distrust.

The United States came into this crisis with enormous advantages. Along with tremendous manufacturing capacity, we have a biomedical research system that is the envy of the world. We have enormous expertise in public health, health policy, and basic biology and have consistently been able to turn that expertise into new therapies and preventive measures. And much of that national expertise resides in government institutions. Yet our leaders have largely chosen to ignore and even denigrate experts.

The response of our nation’s leaders has been consistently inadequate. The federal government has largely abandoned disease control to the states. Governors have varied in their responses, not so much by party as by competence. But whatever their competence, governors do not have the tools that Washington controls. Instead of using those tools, the federal government has undermined them. The Centers for Disease Control and Prevention, which was the world’s leading disease response organization, has been eviscerated and has suffered dramatic testing and policy failures. The National Institutes of Health have played a key role in vaccine development but have been excluded from much crucial government decision making. And the Food and Drug Administration has been shamefully politicized,3 appearing to respond to pressure from the administration rather than scientific evidence. Our current leaders have undercut trust in science and in government,4 causing damage that will certainly outlast them. Instead of relying on expertise, the administration has turned to uninformed “opinion leaders” and charlatans who obscure the truth and facilitate the promulgation of outright lies.

Let’s be clear about the cost of not taking even simple measures. An outbreak that has disproportionately affected communities of color has exacerbated the tensions associated with inequality. Many of our children are missing school at critical times in their social and intellectual development. The hard work of health care professionals, who have put their lives on the line, has not been used wisely. Our current leadership takes pride in the economy, but while most of the world has opened up to some extent, the United States still suffers from disease rates that have prevented many businesses from reopening, with a resultant loss of hundreds of billions of dollars and millions of jobs. And more than 200,000 Americans have died. Some deaths from Covid-19 were unavoidable. But, although it is impossible to project the precise number of additional American lives lost because of weak and inappropriate government policies, it is at least in the tens of thousands in a pandemic that has already killed more Americans than any conflict since World War II.

Anyone else who recklessly squandered lives and money in this way would be suffering legal consequences. Our leaders have largely claimed immunity for their actions. But this election gives us the power to render judgment. Reasonable people will certainly disagree about the many political positions taken by candidates. But truth is neither liberal nor conservative. When it comes to the response to the largest public health crisis of our time, our current political leaders have demonstrated that they are dangerously incompetent. We should not abet them and enable the deaths of thousands more Americans by allowing them to keep their jobs.

Complete Article HERE!