The many functions of an estate plan

Estate planning to a large extent involves the optimal structuring and managing of your assets while you are still alive.

By Devon Card

A person’s estate is made up of all the assets and liabilities they’ve accumulated during their lifetime and, although estate planning is often perceived as something performed in preparation for death, the reality is estate planning to a large extent involves the optimal structuring and managing of your assets while you are still alive.

As a result, it is important not to perceive estate planning as final stage financial planning designed to secure a financial legacy for your loved ones, but rather as a continuous process of managing one’s assets and liabilities throughout your lifetime to ensure that your estate is optimally designed to achieve both your lifetime goals and your objectives following your death. Being multi-disciplinary by nature, your estate plan can be used to achieve many goals:

Determining estate liquidity

Liquidity in your estate is key to ensuring that your estate costs and liabilities can be provided for without compromising the financial inheritance intended for your loved ones. In preparing liquidity calculations, you will need to take into consideration the potential tax, capital gains and estate duty liabilities in your estate, as well as any debt owing – keeping in mind that when it comes to estate administration, Sars and your creditors will be paid first, following which the remaining balance in your estate, if any, will be distributed amongst your heirs. This means that, if there is not enough liquid cash available in your estate to settle with Sars and your creditors, your executor may need to realise assets – such as your primary residence, vehicles, holiday home, or other valuable assets – in order to pay off the estate’s debts. This, in turn, can severely compromise the financial security of your spouse and/or children, who may well be left destitute as a result of inadequate estate planning.

What to consider: Life cover is an excellent mechanism for creating liquidity in your estate and for avoiding the forced sale of assets intended for your loved ones. It is, however, important to ensure that your life cover is appropriately structured to achieve the goal of creating liquidity. Where you nominate your estate as a beneficiary to your life policy, the proceeds will be paid directly into your deceased estate in the event of death and, as such, can be used to settle debt. Remember, however, that the proceeds of domestic life policies are considered deemed property in your estate and will be taken into account for estate duty purposes, so this should be factored into the calculation.

Ensuring beneficiary nomination

Rather than being a once-off task, beneficiary nomination is something that should be reviewed and updated as your personal and financial circumstances change through your lifetime. Further, understanding how beneficiary nomination works in respect of each type of policy or investment is important to ensure that your objectives are met.

For instance, while your children are minors and legally not capable of inheriting, you may use a testamentary trust structure as the beneficiary for your life cover; whereas as your children reach the age of majority, you may want to name them personally as the beneficiaries to this cover to ensure that the proceeds are paid to them directly.

Further, if your intention is for the proceeds of your retirement funds is to provide for your loved one’s financial security, it is important to understand the limitations that Section 37C of the Pension Funds Act brings to the process. Unlike beneficiary nomination on life policies, the distribution of retirement funds benefits (being pension, provident, preservation, and retirement annuity funds) lies ultimately with the fund trustees whose job it is to identify all your financial dependants and to allocate the benefits accordingly – and their determination may not be in line with your wishes.

What to consider: Make a concerted effort to review the beneficiary nomination on your policies and investments on at least an annual basis, and upon any major life event such as the birth of a child, a death in the family, marriage, or divorce.

Drafting your legacy documents

Naturally, an important part of estate planning is to ensure that your legacy documents are appropriately drafted and valid and that they are fully aligned with how you wish your estate to be distributed in the event of death. Along with a well-drafted will, the collation of an estate planning file can be invaluable to your loved ones and to expedite the process of winding up your estate. Essential documents to include your estate planning file include obvious ones such as your birth certificate, marriage certificate, antenuptial contract, divorce certificate, maintenance orders, title deeds, trust deeds and share certificates. Other information that can be kept close at hand includes gun licences, codes for your safe, loan agreements, digital passwords and log on credentials, and alarm codes.

What to consider: A living will can be a valuable document for your loved ones should tragedy strike. In this document, you can provide much-needed guidance to your family and medical doctor regarding end-of-life medical care and treatment – something that can provide great comfort to your loved ones who may be faced with tough medical decisions. Through a living will, you can request that medical treatment that would prolong your life be withheld in circumstances where you are in a permanent, vegetative status, irreversibly unconscious, or where there is no hope of recovery.

Protecting the inheritance of minors

If you have minor children, structuring your estate to ensure that they are adequately provided for in the event of your passing will be imperative. Remember, children under the age of 18 may not inherit lump-sum payouts or other assets directly as they are deemed not to have the legal capacity to manage such assets. Thus, if you intend to nominate a minor child to a life insurance policy or bequeathing immovable property to them, it is important to understand the estate planning mechanisms available to ensure that your objectives are achieved. This could include the formation of a testamentary trust in terms of your will with your minor child as the named beneficiary to the trust. In the event of your death, any assets intended for your minor children can be left to the trust which, in turn, will manage the trust assets until your child reaches the age of majority.

What to consider: If you have a minor child, your will should also make provision for a legal guardian for your child in the event of your death. While your nominated guardian can also be a trustee of the testamentary trust, it is sometimes preferable to keep the roles separate for the sake of maintaining checks and balances.

Ensuring efficient estate administration

Effective estate planning allows one to put mechanisms in place in advance to ensure that in the event of your death the winding-up processes can be expedited and unnecessary delays can be avoided. Simple steps such as ensuring the validity of your will, communicating the location of your original will, appointing a professional executor, and keeping a file of all your estate planning documents, can be hugely beneficial when it comes to streamlining the estate administration process.

For instance, if you no longer have a copy of your marriage certificate, your executor will need to apply for a copy at the Department of Home Affairs which, in turn, will delay the administration process.

What to consider: Executorship is a highly specialised function that requires expertise in finance, deceased estates, trusts and accounting. As a result, think carefully before appointing a family member or close friend as executor. Inexperience and/or lack of understanding with regard to the estate administration process can cause unnecessary delays. Also, remember that family relationships and dynamics change over time, and it may be preferable to appoint a fiduciary expert to this role.

Reducing tax liabilities

While it is not possible to avoid paying tax, proactive estate planning gives you the opportunity to structure your estate so as to reduce the tax obligations of your estate in the event of death. Estate duty, which is essentially tax paid on the transference of wealth from your deceased estate to your beneficiaries is levied at 20% of the dutiable amount of an estate up to R30 million, and at 25% on the dutiable amount exceeding R30 million. Very simplistically, the dutiable value of your deceased estate will be calculated by adding the value of your property, deducting any allowable expenses, and then deducting the Section 4A rebate, keeping in mind that as a South African resident you will be taxed on your worldwide assets.

There are, however, a number of mechanisms that you can use to reduce the estate duty liability in your estate so as to maximise the inheritance of your loved ones. Compulsory retirement funds, including pension, provident, preservation and retirement annuity funds, are not considered property in your deceased estate and these benefits will not be subject to estate duty.

Living annuities are very useful estate planning tools because they also fall outside your estate and are not estate dutiable, while domestic life policies can also be used effectively to provide financially for your loved ones while ensuring that no estate duty is payable on the proceeds. Trusts, which are dealt with in the paragraph below, are also effective in housing growth assets and reducing estate duty liabilities in one’s deceased estate.

What to consider: When using living annuities and domestic life policies to reduce your estate duty liability, it is important to correctly nominate your beneficiaries.

Structuring growth assets appropriately

In terms of the Income Tax Act, death is considered a capital gains event and the deceased person is deemed to have disposed of their assets for an amount equal to the market value of the assets at the date of death. While the Act provides for a once-off exclusion of R300 000 in the year of death, any amount thereafter will have an inclusion rate of 40% subject to tax as per the deceased’s marginal tax rate. To avoid unnecessary CGT being charged in the event of death, an estate plan can help structure growth assets, such as property or shares, to reduce the tax liabilities in your deceased estate.

An effective mechanism for housing growth assets, particularly those intended for future generations, is an inter vivos trust during one’s lifetime. As the trust founder, you would need to either donate or sell the asset to the trust in the form of a loan account following which you would relinquish control of the asset which, going forward, would be managed by the trustees on behalf of the nominated beneficiaries. By transferring a growth asset – such as a holiday home – to a living trust, all growth on the property will remain in the trust and only the loan account to the seller will be repayable on death thereby reducing estate duty.

What to consider: As a trust founder, it is important to fully understand the implications of transferring an asset into a trust structure. Once the asset is transferred, you are no longer the owner of that asset, and your trustees are responsible for taking full control of the asset and administering it in accordance with the trust deed.

Complete Article HERE!

‘We Run Pet Hospice Care For Dying Animals’

Dr. Shea Cox is a vet who helps support pets with hospice and palliative care.

By Dr. Shea Cox

I didn’t grow up with pets but I remember wanting to be a vet since I was 8 years old and working on my stuffed animals as if they were patients. I went into college wanting to be a vet but I failed chemistry three times and ended up going to art school.

In 1991, I moved to LA on a whim. I was broke and looking for a job and ended up working in a nursing home. That led me to nursing school and chemistry started to click. I worked in areas of home hospice and palliative care. That dream never left and I began to think that maybe I could be a vet.

I started taking my prerequisite classes for vet school, and I continued nursing actually to pay my way through vet school. I finally graduated vet school in 2001 and went directly into emergency and critical care.

I spent 13 years working in a veterinary ER​, and during this time, our care evolved and we became a specialty hospital with internal medicine and oncology​. I started to see that during the most critical time in people’s relationship with their pet, when pets were ill or had multiple comorbidities, people would need more time to process complex issues and decisions and they weren’t getting it. We would diagnose their pet with cancer in the ER and people would be left in that state of shock.

I felt like we were failing, and I decided I was going to start offering services strictly focused on hospice and palliative care for pets. But in 2012, when I started offering three hour in-home appointments, people told me that the idea wasn’t financially viable. I said I was going to try. I felt in my heart it was what people and pets needed.

My first hospice patient was a dog named Sunny. Sunny was brought into our veterinary ER with multiple urinary issues by her owner’s fiance, because he was in Colorado at his father’s funeral. I did an exam and discovered it was a tumor that was blocking the urethra so the pet wasn’t able to urinate. It was a situation that is technically one where we would euthanise the animal. But I discovered that Sunny was the pet that had got the owner through his wife’s death. I so clearly remember being in the ER and finding all of this out about the owner and realizing that he could not come back to be with Sunny and say goodbye.

I ended up providing Sunny with an in-dwelling urinary catheter, something which should be in-hospital only. I remember others saying we couldn’t send Sunny home with this catheter, but the alternative was euthanasia, breaking this human/animal bond, not allowing the owner to say goodbye.

Sunny was able to go home and three days later the owner returned and they spent an amazing two weeks together. They managed the catheter and completed their bucket list. Sunny swam in the ocean with her owner and they had a huge party with other dog friends where they ate grilled filet mignon and had these “pupsicle” ice creams. We were able to facilitate a goodbye on the lawn of his house. To be able to create that kind of goodbye for someone, when the alternative would be so different, was life changing for me as a person and a doctor. That is a situation that has lived with me and been my north star since I started this.

For me, hospice and palliative care begins at the time of diagnosis, when there are signs of decline in the pet, because there is so much we can do to improve quality of life and prepare the pet and pet parent. We have had pets in hospice for 18 month to 2 years, so that’s technically palliative care.

Hospice care is done in the pet’s home. We are under the umbrella of the Pearl Pet Hospice but our goal is to be that bridge between the hospital and the home. One of the things I found interesting early on in these 3 hour in-home appointments was that 75 percent of the care people needed help with was non-medical.

Families typically need help planning and goal setting for how they wanted their pet’s end of life to look, help deciding what their bucket list was going to be, whether they wanted a memorial. We discuss what they are struggling with and what their resources are. A lot of the topics are things vets aren’t typically able to address with families because there’s just not the time.

When a family enters their pet into our hospice program, they have an entire team on their side to support them every step of the way. Families work with me, a dedicated nursing team, care coordinators and pet loss support specialists. During our in-home appointment, we educate and empower the family, including in how to recognize signs of decline, how to give medications or injections, and how to monitor progression of their pet’s disease. Following this, the majority of our care continues virtually via telehealth where the family has 7-day a week access to their hospice team for guidance and support until the time of in-home euthanasia. Generally, the pet’s quality of life sky rockets, and the time to euthanasia is generally much farther out than what their pet’s diagnosis would dictate. I’m surprised every day by the difference we can make, and that just makes my heart so full.

Dr. Shea Cox and a Pet Patient
Dr. Shea Cox with Claire, a pet sibling to Sunny, the first animal she helped in hospice care.

The vast majority of my hospice patients are dogs and cats, it is a little more weighted towards dogs, which is surprising since cats don’t generally like to go into hospitals as much. I have had a couple of bird patients. When birds can live for 80 years, people are very bonded to them.

I have helped thousands and thousands of pets in hospice care. I have been doing this close to 10 years and as we have grown as a team, we’ve been able to affect a lot of lives, which is amazing.

Over the past 10 to 15 years I think the human/animal bond has changed dramatically. Millennials are now the largest pet owning population and their pets are their children. When I started this in 2012 in the Bay Area of California, there were four other practices doing something similar. Now I believe there are close to 30. That area may have a unique demographic that supports that but I am seeing this trend across the country.

Pet hospice care is growing pretty rapidly. It has been widely known for around 10 years and in the past five years there has been a large increase of practitioners. The International Association of Animal Hospice and Palliative Care (IAAHPC) is an organization where in the earlier days there were just a couple of hundred of us and now there are close to 2,000 members.

People often say they wish they had known about this for their last pet, or
sooner, and that’s something I want to erase from people’s thoughts. I want everyone to know this is available. The other thing I hear a lot is people asking me how I can do this every day, because it must be so sad and make me depressed. Oddly it’s just the opposite. I spent 13 years in the ER doing everything I could to save lives and I have never been so gratified as being able to end them well. People are so grateful that you are taking the time with them and being caring during one of the most intimate times in their relationship with their animals. Of course, it is sad and I still get teary at every euthanisia, but I leave with my heart so full that it’s hard to say this is anything but the most amazing career in the world.

Complete Article HERE!

The Dead Get a Do-Over

In a flurry of streaming television shows, the departed get a second chance. And viewers find an outlet for sorrow and remorse.

As Cal in “Manifest,” Jack Messina returns from oblivion with supernatural gifts.

By Ruth La Ferla

In “Manifest,” a series streaming on Netflix, Michaela, one of the show’s more candidly troubled characters, turns up with her companions after a lengthy, unexplained absence to be reunited with their families.

She ought to be ecstatic. But her reactions more aptly reflect the Kübler-Ross model of grief, some of its stages — denial, depression and anger — mingling on her features, along with a slow-dawning acceptance. As she tells Jared, her former fiancé, “Part of me wishes we hadn’t come back at all.”

Her response seems relatable. Mourning her life as she knew it, Michaela is one of some 200 passengers on the Montego Air Flight 828, who have mysteriously vanished only to return five years later, not a day older and sound of body but freighted with all manner of weighty emotional baggage.

In “Glitch,” Maria (Daniela Farinacci) resurfaces still caked in the soil from her grave.

That tale is but one in a rash of streaming series finding new audiences in the midst of a lingering pandemic, luring viewers with the suggestion that the boundary between life and death may be porous indeed. The departed get a new purchase on life in “Glitch,” an Australian offering in which the long-expired denizens of Yoorana, a fictional community in the Australian outback, stagger back to their homes, bodies still caked with the soil from their graves.

“The 4400,” focused on the undead but with none of the zombie horror effects, shows the newly risen wielding oddly assorted superpowers. In “The OA,” a fable-like iteration of the resurrection theme, the heroine has perished many times over, blind in one incarnation but gifted in another with an extraordinary second sight. Death itself is illusory, she assures a young school friend. “I think you are always somewhere.”

There is “The Returned,” an American adaptation of “Les Revenants,” a decade-old series about the long-gone members of a French Alpine village intent on picking up the shards of their lives, unaware that their near and dear have long since moved on. And “Katla,” an Icelandic production in which the deceased resurface in the shadow of an active volcano, seeking to salve emotional wounds.

At a time when people are grieving not only their dead, but lost jobs, opportunities and daily routines, the appetite for such fare seems especially poignant. Reveries, sci-fi fantasies or meditations on life’s great mysteries, these shows offer viewers little in the way of resolution but hold out a promise of redemption, reunion and, not least, a chance to muse on their mortality.

“Death has been a more omnipresent force in our lives in the last 18 months than it has been in our lifetimes,” said Steve Leder, the senior rabbi of the Wilshire Boulevard Temple in Los Angeles and the author, most recently, of “The Beauty of What Remains,” about the nature of bereavement.

“Death is no longer something we can banish to the basement of our psyches,” Rabbi Leder said. “It is that broomstick pounding on that basement ceiling, demanding: ‘What about me? Pay attention. I must be reckoned with.’”

Dr. Andre (T.L. Thompson) and Claudette (Jaye Ladymore) of “The 4400” beam down with a mission.

Such shows offer, as well, a chance for viewers to confront, or at least contemplate, their most nagging anxieties. “These shows are our version of a roller coaster, a death-defying ride with the things you fear most.” said David Kessler, whose most recent book, “Finding Meaning, The Sixth Stage of Grief,” explores the reverberations of loss.

“When people are grieving, one of their greatest fears is that they’re going to forget about the person they have lost,” Mr. Kessler said. “We don’t want to move on because that feels like abandoning those we love.”

There is scant chance of that in the latest shows, many of them defunct network series revived for streaming at an eerily opportune time. “We live in the world’s first death-free generation, meaning that many people live into their 40s before experiencing the death of a parent, sometimes even a grandparent,” said Alan Wolfelt, a death educator and grief counselor.

“In a mourning-avoidant culture such as ours watching these shows is, in part, a rehearsal,” he said. “They permit audiences to mourn and to acknowledge the reality of their own death.”

Yet they raise more questions than they can or care to answer. What makes us special? Do we, as in the case of “Manifest,” return with a mission or calling? Are there others like us? Are we in danger, or are we among the chosen? Will we get the chance of a do-over?

Matters of faith are underscored in “Manifest,” as when a startled passer-by drops to her knees at the sight of Cal, the youngest and most insightful of the Flight 828 returnees, chanting, “He is risen.” For people eager to regain some semblance of certainty in a disordered time, these stories exert a powerful pull.

“We’re a very mastery-oriented culture, always wanting answers,” said Pauline Boss, an emeritus professor of family social science at the University of Minnesota and the author of “Ambiguous Loss in a Time of Pandemic and Change.”

“With the spread of the virus, those answers are not necessarily forthcoming,” Dr. Boss said. “We don’t know if we can trust the person at the grocery store, whether or not they have been vaccinated. People are dying apart from their families, and those families may be feeling no sense of closure.

“What we have now is this whole host of ambiguous losses: loss of life, loss of jobs and loss of faith that the world is a safe place.”

“Manifest” will return for a fourth and final season, though Netflix has not announced a date. Peter Friedlander, who heads Netflix scripted series in the United States and Canada, said the series resonates with viewers because of their insatiable craving for mystery.

“It scratches that itch, trying in some way to hypothesize about the great unknown, to explore the notion of revisiting unfinished business,” Mr. Friedlander said. Such fare is a balm as well for people dealing with regret, he suggested, those eager to extract a message of hope from apparently meaningless, ungovernable events.

Sean Cohen, 27, a digital artist in Chicago who posts “Manifest”-inspired illustrations on Instagram, finds solace in the series. “It creates this whole story of how everything that happens is connected,” he said in a direct message on Instagram. There is also the emotional uplift, he said, “of seeing the passengers come together to help one another as the mystery unfolds.”

The show also captivates Princess Louden, 25, a dancer and graduate student in social work in Los Angeles. “‘Manifest’ technically is about something that could never happen,” Ms. Louden said. “It’s not like aliens are invading the planet. But it leaves a little room for all kinds of possibility. That’s what draws me in.”

The show is pure escapism, said Audra Jones Dosunmu, 52, a talent manager in the fashion and entertainment industries. “But there is also the idea that ‘There but for the grace of God go I.’”

“In a way I think of these shows as crisis pornography,’” Ms. Dosunmu added. “People like to see others going through things that they could never manage. But if that makes them feel thankful and better about their own lives, it’s a good thing.”

Many of the shows offer the tantalizing possibility of rescue and redemption, reassuring fans that, as is repeated like a mantra on “Manifest,” “all things work together for good. …”

In “Katla,” the dead, rise naked and covered in ash, a volcano erupts.

On “Manifest,” the risen heed inner voices urging them to acts of heroism. Michaela responds to a “calling” to free two teenagers trapped in a killer’s lair. In “Glitch,” a young woman sets out to confront her rapist and murderer. In “Katla,” estranged sisters, one of them dead, work at mending their frayed relationship; and in “The Returned,” a serial killer in a former life learns to rue and curb his lethal impulses.

These shows explore the prospect of a second chance, of tackling unfinished business, revisiting relationships, and dealing with regret, Mr. Friedlander said. “They let you look at the choices you’ve made and reflect on your priorities and values.

“It’s that sliding-door scenario that asks, ‘What if I could say one more thing to that person I’ve lost?’”

Complete Article HERE!

I’m a hospice nurse and this is what most people say before they die

By Tiffany Wallis

A hospice nurse has revealed what most people say before they die as she spoke out about how we end our lives.

Julie, a registered nurse from Los Angeles, California, has worked in a hospice for around five years.

The nurse has been using her expertise and knowledge to educate her 372,400 TikTok followers about death.

And her heart-warming comments as well as her love for her job have led to her videos going viral with people desperate to know about what to expect when they pass away.

She said: “I love educating patients and families about what to expect with hospices and what to expect with the specific disease they are dying from.

“I also really like giving the patient and family some comfort knowing we will be there to manage their symptoms.

“I have worked as a hospice nurse for about five years and before that, I was an ICU nurse for nine years so I’ve been doing this type of work for 14 years.”

Julie, who shares an insight into her job and answers burning questions everyone wants to know about hospices on her TikTok channel, said her aim is to educate others.

She recently posted a video about the normal things that happen to most people at the end of life — that look abnormal, but are actually really normal.

Julie explained that changes in breathing, changes in skin color, terminal secretions and fevers, just to name a few, are all normal stages.

She said: “The best part about my job is educating patients and families about death and dying as well as supporting them emotionally and physically.

“Also, helping them to understand what to expect is another part of my job as a hospice nurse.

“There is something most people say before they die and it’s usually ‘I love you’ or they call out to their mom or dad — who have usually already died.”

Julie said it’s difficult to explain what happens when people die — generally — as everyone is different.

But at the end of life, if someone is dying naturally in hospice care, most people show the same signs and symptoms.

This is called the actively dying phase.

Julie explained: “The symptoms of the actively dying phase include changes in consciousness (unconscious), changes in breathing, mottling and terminal secretions.”

“These are normal and NOT painful or uncomfortable.”

“Our bodies take care of ourselves at the end of life — the less we intervene, the better.”

There are also some common assumptions that people make about hospices but Julie explained that they’re not true.

She said it’s “not true” that everyone in hospices dies right away and it’s also not true that morphine makes people die faster.

Julie added: “There are some assumptions that people make. Another one that’s completely not true is that hospices kill people.”

Six months ago, Julie decided to share her knowledge of death and dying on social media — and said she couldn’t believe how quickly she went viral.

And the response has been incredible — she regularly shares informative videos answering people’s burning questions about death, dying and the happenings of hospices.

She said: “I knew I had a lot of interesting information about death and dying that most people don’t know about. I want to normalize death by educating people about it. I went home to visit my family, and my tween nieces were on TikTok making dance videos.”

“I later went on TikTok to see their dances. This gave me the idea of starting my own TikTok about death and dying, four days later I did it and it took off.”

“I’ve been doing it for six months now and have over 340,000 followers — it’s crazy!”

Complete Article HERE!

My father asked me to kill him

– As we age, more of us will face questions over assisted dying

A young Professor Luke O’Neill (centre) with his father before his stroke and his sister Helen

The immunologist Professor Luke O’Neill, author of ‘Never Mind the B#ll*cks, Here’s the Science’, reveals how his father asked for help in ending his life after a stroke, and reflects on how legal euthanasia works around the world

By Professor Luke O’Neill

My father asked me to kill him. He was 74, had suffered a stroke at 71 and couldn’t speak properly. He also had paralysis on his left side. He was a widower in a nursing home. We had tried home helps who came in every day, but he was also severely depressed, which made things difficult. He would say to me in his slurred voice: “You work in a lab. You have the chemicals to do it.” He also regularly said, “If I were a horse, you’d shoot me.”

My father, Kevin O’Neill, had a dark sense of humour, so I used to brush these conversations, but I knew he meant it. I would sometimes cry when I left him in his room, his own separate hell.

Should I, out of sympathy and love, have bumped him off? That would have been murder. But what if the law had allowed me to help him die? How would that have worked and would I have had the guts to do it?

Will a time come when euthanasia will be as routine as childbirth, as we head towards a population where the majority are sick and old, with lots of older people actually wanting to die? Or will the discovery of new treatments for diseases and better palliative care make euthanasia unnecessary?

The topic has been widely discussed in the UK again recently, with the Assisted Dying Bill being debated in the House of Lords. We must face this topic head-on.

Prof Luke O'Neill is an Irish immunologist (Photo: Ruth Medjber)
Prof Luke O’Neill is an Irish immunologist

Active euthanasia is legal in Belgium, the Netherlands, Luxembourg, Colombia and Canada. Assisted suicide is legal in Switzerland, Germany, the Netherlands, the State of Victoria in Australia and the US states of California, Oregon, Washington, Montana, Washington DC, Colorado, Hawaii, Maine, Vermont and New Jersey. It is illegal in all other countries, as is non-voluntary euthanasia (where the patient is unable to give consent).

Although legal in the countries mentioned above, it is only allowed under certain circumstances and requires the approval of two doctors and in some places a counsellor. Treatment or medical support being withdrawn because it is considered futile will also hasten death but is not illegal.

The Lords Select Committee on Medical Ethics defines euthanasia as “a deliberate intervention undertaken with the express intention of ending a life to relieve intractable suffering”. Yet in the Netherlands and Belgium it is defined slightly differently as “termination of life by a doctor at the request of the patient”. It doesn’t necessarily have to involve the relief of suffering, which is an important distinction.

The medical understanding of suffering can be hard to pin down. Does psychological suffering count, and how would that be measured? Perhaps the Dutch and Belgians have simplified the definition for that reason.

A historic case of euthanasia in the UK happened in 1936 when King George V was given a fatal dose of morphine and cocaine to hasten his demise from cardio-respiratory failure. This wasn’t made public until 50 years later. But it suggests that euthanasia might not have been so rare in Britain’s past.

Questions about euthanasia will come up more as the population ages. The debate centres on four issues: the right of people to choose their fate; that helping someone to die is better than leaving them to suffer; that the ethical difference between the commonly practised “pulling of the plug” and active euthanasia is not substantive; and that permitting euthanasia will not necessarily lead to unacceptable consequences. This is the case in the Netherlands and Belgium.

Professor Luke O'Neill's father, Kevin (Photo: Luke O'Neill)
Professor Luke O’Neill’s father, Kevin

On consent, perhaps the person is not able to make the decision – determining competence is not straightforward. Perhaps they feels that they are a burden on medical services or on their family. How do we know unscrupulous friends or relatives aren’t pressuring them? Do hospital personnel have an economic incentive to encourage consent?

There seems to be a growing acceptance of euthanasia in the UK. In a 2019 survey of 2,500 people, more than 90 per cent believed that assisted euthanasia should be legalised for those suffering from a terminal illness. Eighty-eight per cent believed that it was acceptable for people living with dementia, provided that they consented before losing their mental capacity.

In another survey, 52 per cent would feel more positive towards their MP if they supported assisted dying, compared to 6 per cent who would feel more negative.

So what concerns people, apart from religious beliefs?

Guidelines and safeguards are important. Physicians and counsellors are all involved in assessing people requesting euthanasia in countries where euthanasia is practised. In the US, Canada and Luxembourg, the person must be over 18. In the Netherlands, the age is 12, while in Belgium there is no age limit as long as the person has the capacity for discernment.

In the US, there is no need for unbearable pain or any symptoms. In the Netherlands, Belgium and Luxembourg, patients must have “unbearable physical or mental suffering” with no likelihood of improvement, although the person doesn’t have to be terminally ill.

There is a danger that people with severe long-standing depression might want to have their life ended if they are terminally ill. This might be difficult to evaluate, as many with a terminal illness may also be clinically depressed.

In the US, assisted suicide must involve a 15-day period between two oral requests, and a 48-hour waiting period after a final written request. In Canada it’s 10 days and in Belgium it’s one month. The Netherlands and Luxembourg do not have any waiting period.

Across all places where it is legal, around 75 per cent of people who undergo assisted suicide are suffering from terminal cancer. The next-highest condition on the list is motor neurone disease, at 10–15 per cent. Pain is not that common as a motivating factor, with issues such as loss of autonomy and dignity being more important.

The bottom line is that euthanasia, when properly regulated, can give us hope of a better quality of death. We must also strive for scientific advances in bringing better treatments or palliative care for those who suffer.

When I think about the rights and wrongs of euthanasia, I think about Christian de Duve, a famous Belgian biochemist who won the Nobel Prize in 1974 for the discovery of the lysosome. This is the garbage disposal system for cells: it destroys parts that are old or worn out and can digest a cell whole when it becomes old or damaged. Lysosomes are a bit like a euthanasia machine for the cell.

Christian died by euthanasia in Belgium at the age of 95, suffering from terminal cancer. De Duve wanted to make the decision while he still could and not to be a burden on his family. Christian spent the last month of his life writing to friends and colleagues to tell them of his decision. In an interview published after his death, he said he intended to put off his death until his four children could be with him. He was at peace with his decision, saying, “It would be an exaggeration to say I’m not afraid of death, but I’m not afraid of what comes after, because I’m not a believer.”

The second person on my mind when I think of this topic is my father. During the winter of 1995–6, Dad suffered several bouts of pneumonia, almost dying on one occasion. In January of 1996 his GP asked to see me. He suggested that perhaps he wouldn’t prescribe another course of antibiotics and would see if my Dad could fight the latest bout on his own. I knew what he was saying by the way he looked at me.

My dad died peacefully of pneumonia (or ‘the old man’s friend’ as he used to call it) in his sleep on 20 February 1996, with me sitting beside his bed, holding his hand. Not a bad way to go, Dad.

Complete Article HERE!

Grieving For Papa, Grieving With Others: My Día De Muertos Diary

When the author’s father died suddenly two years ago in Colombia, the Catholic Church mourning rituals offered little comfort. Two weeks ago, by chance in Mexico City for the annual Día De Muertos (Day of the Dead) celebrations, she finally discovered how these ancient celebratory rituals for the departed can help face the pain, and find true peace.

Mexico’s Día de Muertos, a “magical celebration of death”

By Laura Valentina Cortés Sierra

In my native country of Colombia, when someone dies, the process of mourning is almost always turned over to the Catholic Church. It starts with the wake, set in aseptic shiny salons, surrounded by dozens of other identical rooms, each family has to welcome people who come to give their respects for days, amid religious symbols and white flower crowns. The lonely rituals are interrupted only by the occasional unrequested words of advice from friends or clergy about the right way to mourn.

For my first 22 years, I’d observed all of this with mild irritation from a distance at the few wakes and funerals I’d attended. Then, one Easter week, the family crying desperately in the center of the cold room was my own.

I lost my dad, who was a perfectly healthy recently retired physical education teacher, to a cardiorespiratory stroke while he was sleeping. He was just 65.

Overshadowed by religious rituals

My foggy memory from those horrid days included comments from supposed well-wishers like “Stop crying, God knows what he’s doing,” “It was God’s will” or “maybe God is trying to teach you something.” The misplaced advice made me feel isolated and lost. Since I was young, I had no longer considered myself a Catholic; but even more so I wanted desperately for my dad to be the center of his own funeral, and did what I could by placing photos over the cold brown coffin, playing his favorite songs while he was lowered in his grave, and sharing a song my brother and I wrote on his online memorial.

I never imagined grief could feel so lonely when you are a non-religious person in a Catholic country like Colombia. Even the flower crowns and visits from friends were overshadowed by the religious emphasis and obligations, such as praying nine nights in a row and repeatedly being encouraged to cross myself. They were demands of a religion I didn’t want to be part of, with the unspoken message that this was the only possible guidance on how to grieve for my dad.

Altars in Mexico City on Día de Muertos

A shot of memory, breaking grief taboo

Fast forward two and a half years to the final week of October 2021. I’d arrived in Mexico City for a Latin American journalism conference, and after landing realized my visit happened to coincide with Día de Muertos. These “Day of the Dead” festivities are celebrated between October 30 and November 2, in which Mexicans welcome with an altar their deceased loved ones whom they believe come to visit the living on these dates each year. In this festivity of Aztec origins, Catholic rituals of popular tradition intertwine, a smooth syncretizing of cultures and faiths.

Candles smoothly twinkled over a small table while yellow petals framed the photographs of loved ones.

I’d heard of Día de Muertos, and from a distance, it had seemed colorful and attractive, and the movie Coco had given a fascinating glimpse of how its fantastic visuals and music could create a magical celebration of death. Still, this was the first time I’d experienced it myself, and still facing the unresolved grieving for my father.

I arrived for the first Halloween parties, just a few days before Día de Muertos. Between Tamarindo Smirnoff’s sweetly-spicy burning flavor, young Mexicans started telling the stories of their deceased in front of the host’s altar. Candles smoothly twinkled over a small table while yellow petals framed the photographs of loved ones. A small cross above and a tequila bottle, of the favorite brand of the deceased, lay on the table. One by one, the friends each shared memories of a relative they’d lost including a high school friend that had died in a car accident.

The combination of joy and death had always seemed so alien to me, yet at that party I felt it for the very first time. Mexican journalist and friend Paul Antoine Matos gave me his first book, Embellecedores de Huesos (“Beautifiers of Bones”) in which he narrates the unique custom of Pomuch town citizens of cleaning their deceased bones year by year to somehow bring them back. One of the locals of Pomuch said to him “The environment during these days is festive and joyful, because you feel that your family is by your side.” I felt the warm and slightly overwhelming reality of being part of a huge group of people all grieving someone at the same time. It is an intense throat-tightening cocktail of emotions that I can only describe as a national hug.

It was so far from the awkward silences I knew back at home when someone asked about my parents, and I had to answer that my papa passed away. Far from the heavy religious judgment when people assumed I was angry at God because my dad had died. Here I was listening to people my age remembering and honoring the memory of those they lost while having some shots to definitively break the taboos I’d been surrounded by since losing my father.

A city of grief, joy, memory and resistance

The tall buildings and old houses of the busy metropolis of Mexico City during this time of the year are colored yellow and lilac. The orange-toned flower represents life and the sun, and the purple refers to loss and mourning. Both are Cempasúchil, the flower of the dead according to the Aztecs, as it’s thought that its petals are able to keep the heat of the sun and shelter the dead while their aroma guides their soul’s return.

The altars are everywhere, from museums to bars. One of the first ones I saw was in The Museum of Memory and Tolerance, where the message “phobias that kill, the colors of grief” was displayed by the Pride flag. Then I visited the massive altar in the center of Coyoacán in which, under the big bell of the central plaza, candles, skulls, flowers and photographs shared the space with messages for femicide victims “not even one more killed,” for migrants “for all those that died trying to cross our borders” and for journalists “for the journalists that have died reporting.”

My mind was transported to my homeland, 1,900 miles to the south. I cried, sheltered by the loud masses and the dim lights of the altar. Colombia, a country where defending human rights represents a mortal danger and more than 1,200 social activists have been killed after believing in a badly implemented peace treaty in 2016. Mexico has its own plagues, like currently being the country where more journalists are killed in the world. Though not for a direct loved one, my grief was irrepressible.

Catrinas” participate in a silent procession in memory of the victims of femicide, on the Día de Muertos in Saltillo, Mexico. 02 November 2021.

Mexico and Colombia, a shared history

Mexico and Colombia share a history of colonization, massacres and social mobilization. Two countries that lead the rates of environmental and human rights defenders killings. Two countries where gender-based violence is a pandemic. In Colombia, in 2019, every day 95 girls denounced sexual violence. In Mexico from January to May 2021, there have been 423 femicides. I cried for them, I cried from a deeply engrained grief I knew I had but never before came pouring out. A peacefulness and solemnity I didn’t know could come with grief.

I was transported to 2016 when I marched for peace in Colombia with my dad. We all had so much hope in the treaties that were being negotiated. We all deserved a different country. My dad taught me to doubt politicians, to truly care about the well-being of others, to give generously, and listen patiently, even if the world is not always kind in return. I remember the Club Colombia beer he drink with lunch and the way he silently cried sometimes when music invaded him, regardless of the genre. He was a sensitive and curious soul. In love with this world and always teaching me about it. I wish we had walked between the trees of Mexico City together. I wish I didn’t have to write this piece.

I dried my tears and kept exploring the packed streets of Frida Kahlo’s neighborhood, slightly terrified by the people with Pennywise and Chucky costumes. It was fascinating to see Mexicans and tourists of all ages impersonating superheroes, witches and catrinas. The omnipresent skeleton representation of a woman is the death that comes to visit. It is a symbol with origins in a reinterpretation of the Aztecs Goddess of death by José Guadalupe Posada, who wanted to communicate with the satirical attire that no matter how rich or poor you are, we will all end up as skeletons.

Gratitude and sharing

Ecuadorian, Guatemalan and Colombian journalists, as well as other Latinxs, we all felt so lucky to have experienced a conference in Mexico city on these particular dates. We even participated in the rituals that showcased the exceptional relationship that Mexicans have with death. On our last day together, one of the Mexican delegates at the conference offered to share his altar with those of us who had lost someone.

During the conference, we got the news a dear journalist for all of us had suddenly lost her boyfriend. She was not able to travel to Mexico, but we all felt her close to our hearts. Even if she was back in Venezuela, we put her boyfriend’s photo on the altar. It shared the place of honor with a picture of my dad, who died two-and-a-half years ago; with the photo of my Ecuadorian friend’s mama, who left nine years ago, with the drawings of my Colombian friend’s papa and best friend, each departed just a few months ago.

In the land of death and the Día de Muertos celebration, there is no place for hierarchies or differences in the right to grieve depending on how old or recent your loss is. In Colombia, the masses to commemorate my papa’s death become less frequent with time, and the only thing mentioned now is his name.

The possibility to return to the world of the living, to reunite with our people, to resurrect…

That 30th of October on a white Altar with a few candles, our missed ones shared a mezcal bottle and the Yucatan region Pibipollo, tamale-like chicken pastry, cooked in a hole under the earth, “a metaphor of burial” as my friend Matos described it. Mexico was hosting our Latin American ancestors for a feast on a celebration where the bridge stands between life and death, a bridge called remembrance, as the song in Coco successfully imprinted on us.

Hugging, and letting out tears of happy nostalgia, we remembered their favorite songs, their happiest moments, their favorite outfits and even their very human defects. We felt embraced both by them and by each other. Mexico was giving me a sense of collective grief and accompaniment I never imagined possible. Mexico was healing a part of my heart that was angry at the world for not listening to my desperate scream for community and empathy. Grief acquired a surprising new taste of gratitude.

“It is a beautiful gesture of gratitude that the Mexicans have towards those who have gone before us. From them, we inherit the land, culture, education and life” fellow Colombian Julián de Zubiría Samper wrote in a recent article in El Espectador about Día de Muertos. “What this millenary custom shows us is that we have to thank those who gave us life and speak again with those who left sooner than expected.”

Connection beyond religion

I remember one of my worst memories of grieving back at home when a priest gave a eulogy centered on my father’s duty to repent and accompany a God he didn’t really adore. Now, instead, this ancient Mexican rite was giving my dad a singular place of importance, not that of a priest’s pawn or a subject of God.

“The Day of the Dead is the possibility that we all have to return to the world of the living, to reunite with our people, to resurrect,” Matos wrote in his recent book. Despite being a Catholic country as well, the eclecticism of its beautiful syncretic traditions rooted in precolonial cosmovisions was allowing my dad to come back for something like a real-life chat with me as we shared a few Mezcales and a shot of tequila (though I know he’d prefer a beer!).

I don’t know if something inside has healed permanently or if it was more like a breath of fresh air before going back to feeling the same isolation when I return to Bogotà. What I do have now is a place where I can sit once a year and feel closer to the signs Papa keeps sending me. I’m not sure in which city, but from now on my dad will always have an altar he can come to visit. Who knows, we might get to share his favorite Colombian beer next time.

Complete Article HERE!

A terminally ill Hopkins woman shares her plans to die with dignity

Voluntarily stopping eating and drinking (VSED) will allow a woman with Alzheimer’s to die on her own terms.

Cheryl Harms Hauser with her husband, David McNally, at their home in Hopkins.

By Kevyn Burger

Warm and lively, Cheryl Harms Hauser relished her hostess duties when a visitor arrived at her Hopkins home, telling the back stories of the art hanging on the walls, selecting the perfect color of mug for coffee.

Despite her outgoing personality and fashionable appearance, Hauser, 75, did not dress herself. She can’t dial a phone, set a table or follow the plot line in a television series.

Two years ago she was diagnosed as having Alzheimer’s disease. Now this wife, mother and grandmother is planning a way to die before dementia claims her.

Hauser has decided that at an as yet unnamed date, she will hasten her death through a process called VSED: she will voluntarily stop eating and drinking.

“When the day comes when nothing matters anymore, I’ll begin,” she said. “My brother died of this disease and it was torture. I don’t want that for me and my family.”

In the past few years, VSED has emerged as a possible course of action for people diagnosed with terminal illnesses or progressive diseases. In the face of great suffering or a long, irreversible deterioration, the people who choose VSED refuse to swallow food or sip liquids. It typically takes 10 days to two weeks for them to die.

“Some people want to go out fighting to the end, but that’s not for everyone,” said Dr. Timothy Quill, a Rochester, N.Y., palliative care physician who has provided medical support to VSED patients. Quill also co-authored “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death,” which was published earlier this year.

“Of what I call the ‘last resort’ options, VSED is the most available and least well described,” he said. “It appeals to people on the sicker end of the spectrum. They’re prepared for the end of their life and want to speed things up. It’s not dissimilar to someone who chooses to end life-sustaining treatments.”

Humans have informally chosen VSED for centuries. But carrying it out today is no simple act. People opting for this method need a doctor’s supervision that includes medication, symptom management and hospice care, Quill said.

They also need family support.

“They need a partner with some sophistication who is willing to go through this process with them,” Quill said. “They need to share the same values and have many conversations to make sure everyone is on the same page.”

For Hauser, that partner is her husband, David McNally.

Friends introduced the pair in 2007. A mother of three, Hauser was thrice divorced and McNally was a widower whose first wife and the mother of his five children had died of ovarian cancer.

“We crawled into love,” Hauser said, smiling at her husband. “With my track record, I resisted for a long time before I succumbed.”

Four years into their relationship, Hauser was by McNally’s side as he faced a debilitating form of throat cancer. His radiation treatments left him thin, weakened and dependent on a feeding tube for a time.

“We didn’t need to get married, but when we bought this house together [in 2016], I turned a corner. Something bubbled up,” McNally said. “I told Cheryl, ‘I wouldn’t mind being married. Actually, I would love it.'”

But within a few years of exchanging their vows, they both noticed changes in Hauser’s behavior and memory. That led to her being diagnosed with the fatal disease.

“Cheryl’s level of self-awareness is high. She observes things and can talk about them because she is not in denial or frightened. This side of her brain is dying,” said McNally, touching his wife’s styled hair. “We have seen the MRIs.”

A leadership consultant, speaker and author of five bestselling business books, McNally has put his career on hold while he assumes duties as his wife’s full-time caregiver.

Because Hauser is no longer comfortable being alone, her daughter Wendy Longacre Brown creates a weekly Google calendar and shares it with her sister and a few of Hauser’s friends so they can sign up to be on duty when McNally needs a break.

“My mom prides herself on being dignified,” Brown said. “She’s the person who always showed up with lipstick, sent the handwritten cards. She’s losing the values she’s held closely, the ones that identify who she is. She’s begun mourning that person and I mourn with her.”

Brown is a trained and certified death doula whose work focuses on providing emotional and spiritual support, rather than medical care, for the dying and their families. She’s now using her knowledge to help her mother with end-of-life decisions.

“Mom has tremendous courage and clarity. She’s decided she doesn’t want her life to end in a nursing home, unable to recognize her loved ones or herself in the mirror,” said Brown. “I’m so proud of her. She gets up every day to live the best life she can.”

A good death

Brown became familiar with VSED through the influential book “Choosing to Die” by Phyllis Shacter, which she shared with her mother.

“That got the conversation started,” Brown said. “We talked and talked and Mom said right away, ‘I think this is for me.'”

Part memoir, part how-to manual, it tells how Shacter helped Alan, her husband of 26 years, carry out his wish to use VSED to hasten his death.

“That was in 2011. We had no guidance at the time on how to do this,” she said. “We were the guinea pigs, the forerunners. When we heard about it, it sounded horrible. After we investigated, it didn’t.”

Like Hauser, Alan was diagnosed with Alzheimer’s. When he was in the early stages of the disease, he signed a health care directive and authorized his wife to carry out his wishes.

“We understood what lay ahead,” she said. “Alan had to stop eating and drinking while he was still mentally competent. One day he told me, ‘I’m ready. It’s time.'”

To start the process, Alan consumed only 500 calories a day for five days. He said his goodbyes to his daughter and friends, then he settled into his bed and soon was mostly sleeping.

“We played music, I massaged him. He wasn’t hungry, but he was thirsty and I sprayed mist into his mouth,” she said. “On the last day he was comatose, but when I said, ‘Blink your eyes if you are comfortable,’ he did. He had taken care of his business and I knew he was all right.”

Shacter relied on medical supervision. In the nine days that it took Alan to die, he received ongoing care and medication from hospice caregivers and a physician.

“These are not suicides, but rather elective deaths,” she said. “We made a conscious decision to go outside the natural order to bring death on.”

A little known option

Quill explained that hunger quickly diminishes in VSED patients, but they remain thirsty, which is treated with oral swabs, mists or swishing and spitting. Once they become dehydrated, their blood pressure drops, resulting in organ failure. That’s when medical and hospice providers begin administering stronger painkillers. Most patients experience agitation, delirium and/or hallucinations in the 24 hours before death and are sedated with anti-anxiety drugs and tranquilizers.

By the time death nears, patients have fallen into unconsciousness. Then they stop breathing and their heart stops.

“There’s no suffering in the last hours. They appear to be sleeping,” said Quill. “If you view death as part of the life cycle, which is how I see it, it’s a quiet process.”

Thaddeus Pope, a professor at Mitchell Hamline School of Law who has spent 20 years writing and teaching about end-of-life precedents,contributed the legal perspectives of VSED as co-editor of Quill’s book. He said the topic often remains taboo among both medical practitioners and individuals at the end of life.

“This is a legitimate option for those in late stage disease, but it’s not on the menu,” Pope said.”It’s almost invisible, underground. You have to know to ask for it. People don’t know how to talk to their doctor about VSED.”

Leading the ship

Hauser has signed an advance care directive, which has an attachment that spells out her desire to use VSED to hasten her death. It asks for the process to begin when, among other things, “I lose my ability to have logical conversations,” and “When I get lost in familiar locations.”

The document also asks that she receive her care at home with no life-prolonging procedures so that she can die with “dignity and grace.”

In March of 2020, Brown shot a video of her mother stating her wishes. Brown plans to record another video when the time to execute the VSED plan begins “so if there is an authority who questions whose idea this was, the source will be in front of them,” Brown said.

Brown talks to her mother and stepfather every day and visits frequently to track the small cues that mark the progression of the disease in her mother.

“My job is to support my mom and her wishes and to know when she is still able to make the decision on her own so we can fulfill that wish,” she said.

Harms said she wants to spend her final days in the den of the home she shares with McNally. She’s also specified the songs she wants playing and the people she hopes will stop by. But she understands that there’s always an out.

“If, three days in, she says, ‘This is too scary. I want a meal,’ we will remind her of her words and show her the video. But if she decides she’s not willing to do it anymore, we will honor that, no question,” Brown said. “It will be a big surprise to me if she says stop. No one is leading this ship but my mom.”

Finding joy

For now, Hauser and McNally remain socially active. Hauser regularly attends her grandchildren’s sporting events (although she sometimes needs to be reminded about which team to root for).

In the past year, she has taken up a new pastime — and earned a nickname.She dances to music while painting, dabbing and dashing acrylic paint onto canvases to create one-of-a-kind colorful abstracts. McNally calls her Picassorina.

She’s asked that her paintings be offered for sale at the reception that will follow her memorial service, and that the proceeds go to an as yet unnamed end-of-life nonprofit.

“I’ve always loved art and creating like this is very therapeutic. It makes me feel good,” Hauser said. “My mantra is, I will not do anything that doesn’t bring me joy.”

Hauser and McNally have been transparent with their family and friends about their decisions and consider sharing their part of Hauser’s final mission — and her legacy.

“We talk openly about VSED and we want to encourage people to have these conversations about death and how they want to die,” she said. “I have had time to get to acceptance and I want to share my journey. This is what I have to give.”

Complete Article HERE!