Category: Death Education

Posted on

Understanding Hospice

— The emotional difficulties of hospice care have made it underutilized and, to some, taboo — medical professionals are trying to change that

By

Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.

“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”

Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.

“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”

Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.

Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.

Destigmatizing Hospice

While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.

Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.

“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”

Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”

Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.

Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.

On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”

Pediatric Hospice Care

When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.

In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.

“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”

Planning Ahead

Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”

Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.

As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations.
—Zach Holt, CEO of Crater Community Hospice

Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.

Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.

Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.

“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”

Choosing a Hospice Provider

  • Start your hospice conversation with your health care team and ask about preferred partners.
  • Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
  • Talk to friends, family and neighbors about their experiences with hospice.
  • Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.

Complete Article ↪HERE↩!

Posted on

Understanding Palliative Care

— And when it may help

By Dr. Rachel L. Ombres AHN

Caring for people with serious illnesses or chronic conditions is one of health care’s most complicated — and important — challenges.

While medicine continues to improve the way we treat diseases such as cancer or heart failure, it doesn’t always do a great job of caring for the things that matter most to patients and their families, such as physical and emotional distress.

And despite their frequent visits to doctors and hospitals, people living with serious medical conditions may still have unaddressed symptoms like pain or fatigue, and often report poor communication about those symptoms with their health care providers.

In other words, medicine is pretty great at treating the disease — but not as good at caring for the whole person.

That’s where palliative care specialists enter the picture, helping people live and feel better throughout the course of a serious illness.

Palliative care is a growing field of medicine that focuses on helping patients and their families cope with the physical and emotional stressors of advancing health problems. There is strong evidence that palliative care not only can improve quality of life for seriously ill patients, but also may reduce avoidable hospital admissions and enable patients to spend more time at home doing what matters most to them.

What is palliative care?

Palliative care focuses on providing people with relief from the symptoms and stressors of serious illnesses, such as cancer, chronic heart or lung disease, dementia, neurologic diseases like Parkinson’s, chronic liver disease, kidney failure, and many others.

Delivered by a specialty-trained team of doctors, nurses, social workers and other clinicians, palliative care provides expertise in symptom management, care coordination and communication, with the goal of improving quality of life for both the patient and their loved ones. Palliative care is appropriate for people at any age, and any stage of a serious illness.

Importantly, palliative care is not the same thing as hospice.

While palliative care is led by clinicians specifically trained in that field, it’s provided in collaboration with other health care providers, including primary care doctors and specialists — and, unlike hospice care, it can be administered at the same time that the patient is receiving curative treatment, and at any stage of serious illness from the time of initial diagnosis.

A person with cancer undergoing chemotherapy, for example, might benefit from palliative care, as would a person with lung disease seeking a lung transplant. In fact, when people facing a serious illness receive palliative care early in their disease and alongside treatment for their underlying condition, evidence demonstrates that it may even prolong survival.

Unfortunately, the historical misunderstanding about palliative care’s association with hospice — and the general lack of awareness about palliative medicine as a specialty, even among providers — means that millions of people who could benefit from palliative care don’t get it.

Worldwide, only about 14% of people who need palliative care currently receive it, according to the World Health Organization.

Where can I receive palliative care?

Palliative care is provided in all settings. To best meet the needs of their patients, palliative care teams see people in the hospital, outpatient clinics, nursing facilities — and even in the comfort of their own homes.

Providing home and community-based palliative care is not only convenient for patients and their families, but it also aims to reduce certain complications of advanced illness that would otherwise require emergency room visits and hospitalizations.

The benefits — patients who feel better, have fewer unnecessary hospitalizations and have more support during stressful times — are attractive to patients, families and insurers alike. As a result, insurance providers such as Medicare are changing the way they reimburse for home-based palliative services, while health systems and other agencies are actively expanding access to palliative care across Pennsylvania and nationwide.

Today, there are more options than ever for home- and community-based palliative care.

How palliative care can help: One patient’s story

Barbara had just retired from a career in management at a local grocery store. She looked forward to the added time retirement would give her to do what mattered most, like spend time with her family and tend to her garden.

Unfortunately, a new cancer diagnosis thwarted these plans, and she was soon spending more time in the chemotherapy suite than with her grandchildren or her prized perennials. Barbara’s pain and fatigue prevented her from being active outside and limited her appetite.

When her primary care provider referred her to palliative care, Barbara was unsure what to expect.

The palliative physician suggested several interventions to help Barbara feel and function better, including medication changes and gentle exercise techniques, and provided additional resources for her family. The palliative care team also helped Barbara understand her care options and encouraged her to speak up about her preferences to her other health care providers and to her loved ones, so that everyone was on the same page about supporting her goals.

In time, these interventions helped lessen Barbara’s symptoms and streamline her care. Throughout her cancer journey, the palliative care team has remained a constant layer of support for Barbara and her family. With close attention to her goals and symptoms, the palliative care team helps Barbara live as well as possible, despite having a serious illness.

If you or a loved one has a serious medical condition, ask your doctor or insurance provider about a referral to palliative care.

Posted on

Illness and death are facts of life

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

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

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

By Nadine Levy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

Posted on

How will you be remembered?

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

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

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

By Katherine Kam

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

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

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

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

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

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

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

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

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

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

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

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

Volunteer and work legacies matter, too

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

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

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

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

Complete Article ↪HERE↩!

Posted on

Palliative and hospice care in hospitals and clinics

— The good, the bad, and the ugly

By Earl Stewart, Jr., MD & Miguel Villagra, MD

I walk into the patient’s hospital room during evening rounds. He looks pale and tired, having recently completed a round of chemotherapy for his stage IV pancreatic cancer. His wife is at the bedside, scared and concerned about her husband’s rapid decline. I sit down to discuss goals of care when the patient immediately says, “I can’t do this anymore.” His wife responds immediately to the patient: “Of course you can.” As I delve deeper into the patient’s constant pain and discomfort, the conversation naturally shifts toward a comfort care-focused approach. After 55 minutes at the bedside, both patient and wife agree to further discuss this with the palliative care team. Ultimately, the medical team decided to transition the patient to hospice care.

Similar examples exist in outpatient practice. Take, for example, the 56-year-old female patient with metastatic non-small cell lung cancer who would clearly benefit from early institution of palliative care given the known mortality benefit. When you see her time and again, she engages in candid discussions with you as her physician that she would rather let “nature take its course.” She doesn’t want chemotherapy. She refused radiation. She continues to smoke. She doesn’t want her family to know, and palliative care options, though previously discussed with her, remain out of the question for her.

These are realistic examples from daily practice that present an interesting quagmire to the practicing physician as he or she treads the lines of patient autonomy and applies the evidence of what has been shown to clearly help a patient feel and live better, especially those with terminal illnesses. Tools exist to aid with these difficult conversations, and awareness among the patient, health care professionals, and family members makes all the difference in having these critical discussions. It’s often rather difficult to accept when you are taught to do something but come to the realization that sometimes doing nothing is what a patient prefers. In that moment, you realize that doing nothing means doing everything.

Sometimes practicing hospital medicine is a battle between life and death. Outpatient practice, too, is rife with such battles between the material and immaterial. Palliative and hospice care, though different, offer hope and comfort in some cases. Together, these medical disciplines not only alleviate physical suffering but also, through a conjoined care model, address the emotional and spiritual needs of patients and their families, guiding them through one of life’s most difficult journeys.

Palliative care is a specialized approach that aims to alleviate physical symptoms, manage pain effectively, and reduce the emotional and psychological distress experienced by individuals facing incurable illnesses, irrespective of their specific diagnosis. Palliative care is designed to improve the quality of life for both patients and their families. At the center of this is holistic care. A patient qualifies for hospice services if he or she has an illness that limits his or her life expectancy to six months or less.

Transitioning a patient from palliative care to hospice care is a crucial step that signifies a shift toward comfort-focused end-of-life treatment. Clear communication, compassionate support, and honoring patient and family preferences play critical roles in improving quality of life, increasing satisfaction with care, and enhancing emotional well-being during this transition. This process ultimately hinges on doing what is in the patient’s best interest and ensuring a death with dignity.

Physicians navigating palliative and hospice care face a unique set of emotional and professional challenges, such as handling end-of-life conversations with families to determine a patient’s goals of care, managing pain and symptom control effectively, and addressing spiritual distress in patients. However, within these challenges, there is a profound reward in making a significant difference in the final stages of a patient’s life. It has been previously heralded that caring for the dying patient is indeed a rewarding challenge given the intricacies it presents and doing so is crucially important is physician education. We now know that not only does education matter for physicians in these veins of practice, but it matters for nurses as well.

In palliative and hospice care, an interdisciplinary approach involves physicians overseeing medical decisions, nurses providing direct patient care and symptom management, social workers addressing psychosocial needs, chaplains offering spiritual support, and pharmacists ensuring proper medication management. Each team member contributes his or her expertise to create a comprehensive care plan that supports the physical, spiritual, and psychosocial well-being of the patient, highlighting the power of collaboration in providing holistic, patient-centered care.

Physicians navigating the complexities of palliative and hospice care must adopt practical strategies for effective patient management and compassionate support. Key strategies include fostering open communication with patients and their families, setting realistic expectations, and managing one’s own emotional well-being. Active listening, providing clear and empathic explanations, and involving the entire care team in medical decision-making are crucial for effective patient care.

Though we understand more as a physician community about employing palliative and hospice services for our patients when apropos to providing evidenced-based care, we are aware there is still work to be done to better the delivery of this care.

It has been documented that work is needed to further guide the integration of the family meeting specifically into oncology practice.

Recent data have shown how the institution of information technology and so-called “e-health” methods can be very helpful in individualizing care and extending palliative care services to patients.

We will all have these conversations. We will see patients like these. We charge all physicians to embrace the tenets of palliative care and hospice when appropriate for their patients and to learn more about the services offered in their hospitals, health systems, and practice structures to provide for the most optimal health outcomes.

Complete Article ↪HERE↩!

Posted on

I understand why people are wary about assisted dying

— But it gave my mother a dignified end

Protesters gather in London to call for a change in the law to support assisted dying.

The Dutch legalisation spared her further misery. We don’t take euthanasia lightly; we’re just grateful to have the option

By

My mother, Jannèt, was 90 years old when she ended her life by means of euthanasia. For years she had been suffering from numerous serious and painful conditions that made her life miserable. She always worried about her health and was terrified of what the future undeniably held in store for her: more pain, more dependence on others, more suffering, more desperation.

On 20 June 2022 at 2pm she was visited by a doctor and a nurse. They had a last conversation with her, during which the doctor asked her if euthanasia was still what she wanted. My mother said yes. She had already decided that she would take the drink herself instead of being injected. She didn’t want to mentally burden the doctor more than necessary.

I was impressed by my mother’s courage in the face of death. She was completely calm, almost cheerful. Before the procedure started, she spoke briefly to us, her three daughters. She told us how it was important to take care of the Earth wisely, to recycle as much as possible and to look after one another. She then drank the small cup in one gulp. She fell asleep very quickly and 15 minutes later the doctor told us her heart had stopped beating. A long and tormented life had come to an end.

The country in which I live, the Netherlands, was the first in the world to legalise euthanasia in specific cases. That was in 2001. Assisted dying has become generally accepted in our country. We talk about it openly and we consider the possibility when situations call for it. We are grateful that this option exists, because it prevents so much pointless suffering. But we never talk about it lightly. Assisted dying has always remained something huge, something you don’t resort to lightheartedly.

Renate van der Zee’s mother Jannèt
‘I was impressed by my mother’s courage in the face of death.’ Renate van der Zee’s mother Jannèt

As a matter of fact, you can’t. In the Netherlands it will always remain a criminal offence to end a life. Exceptions are made only when a whole range of requirements are met. First of all, the patient must ask for it themselves and must therefore be mentally capable of asking for it. In addition, there are all kinds of due care requirements. For example, the doctor must be convinced that the request for assisted dying is voluntary and that the patient has carefully thought it through. The doctor must also be convinced that the patient’s suffering is hopeless and unbearable. That they can no longer heal, that it is not possible to alleviate their suffering and that there is no reasonable other solution. At least one other independent doctor must be consulted. That independent doctor will discuss the situation with the patient and form his or her own opinion about the situation.

Assisted dying is allowed only if a person is suffering owing to a medical cause, not if someone is simply tired of life or feels that their life is complete. My mother didn’t feel that her life was complete. There were still things that made her happy. She loved flowers and plants; she loved politics; she followed the news. But because of her deafness, incontinence and many other conditions she became socially isolated. Visits from friends became too much for her, and at a certain point even phone calls became impossible.

Walking became very difficult, and she grew afraid to go outside. She always loved to wander through a neighbourhood park, especially in springtime, when the bluebells and lilies of the valley bloomed abundantly. But she was no longer able to go there, not even in a wheelchair. She always enjoyed reading and watching nature programmes, but those things too became increasingly difficult. Her numerous ailments and her lack of mental resilience to deal with them made a normal daily existence impossible. And there was no prospect of improvement.

My mother’s euthanasia was a long process. Five years before her death, she told her GP that assisted dying was what she wanted if her life became unbearable. Over the years, my older sister discussed this wish with her during long conversations. She also took charge of all the conversations that were necessary before permission was finally given.

My mother wanted to celebrate her 90th birthday before she took leave of life. Her last birthday fell on Easter, which she regarded as meaningful. But what kind of birthday gift can you give to someone who will soon be gone? My older sister came up with the idea of making a book in which all her loved ones wrote down what she meant to them, or reminisced. She was very happy with that.

We sat close to her when she died. My younger sister took my mother’s hand and she held it tightly. The older sibling said in a soft voice, “You can close your eyes now, Mum.” That’s what my mother did. I sat there and tried not to cry. It’s not easy to witness your mother drinking a deadly potion and dying after 15 minutes.

The next day was the first day of summer. The sun was shining, the weather was beautiful. I woke up with the pain that my mother was gone. But also with a feeling of relief and deep gratitude that, after such an incredibly difficult life, she had been granted a painless and dignified death. I knew we had given her a great gift.

Complete Article ↪HERE↩!

Posted on

Communing with spirits and coping with death

— Grief food in three cultures

In Mexico, sugar skulls are made to represent the soul of a departed loved one

Rituals around preparing and eating ‘grief food’ bring comfort to mourners – from Russia to Sri Lanka – and connect them to the dead.

By Annie Hariharan

In Mexico, pan de muerto (bread of the dead) is a special sweet bread made annually for the Day of the Dead in early November.

Shaped like a roll and topped with a cross and a nub – meant to symbolise bones and teardrops or hearts – the pan de muerto is both an offering to the deceased and a treat for everyone, explains Kati Hogarth. She grew up in Mexico but now calls Australia home and works in the creative industry. “It’s a bit sweet”, she adds, “to lure the spirits to come and share it with us.”

Pan de Muerte
Pan de Muerto is sweetened ‘to lure the spirits to come and share it with us’ says Kati Hogarth who grew up in Mexico

Food is closely connected to our rituals around death. Whether we are inviting spirits to commune with us or preparing feasts for the grieving, food provides solace, comfort and nourishment – often of the soul – at a time of mourning.

For example, in countries like the US and Australia, friends and neighbours will drop off casseroles or lasagnas, understanding that the bereaved often don’t have time or energy to make food.

Of course, many countries do not turn to a meat-and-cheese carbfest to mark a loved one’s passing. But those acts of cooking and eating – those heartfelt rituals around food – hold significant meaning when it comes to burials, mourning and even the remembrance of ancestors.

Altar
A Mexican altar to departed family members includes sugar skulls made to represent the souls of departed loved ones

Take koliva (also spelled kolyva, koljivo or coliva), a wheat-based dish that makes an appearance at Orthodox Christian funerals – from Greece to Russia – and is served in similar yet slightly different ways.

In Russia, the spelling is different – kutia – but Anastasia Kaissidis, a Russian mother of two who now calls Australia home, explains that it is essentially the same dish.

“It is like porridge but more sticky than watery. We make it with boiled wheat, barley and sometimes rice. Then, we add honey for the sweet taste and dried fruits like sultanas or berries and walnuts,” Kaissidis says. “It is really easy and quick to make. There’s no meat in it and most people would have ingredients like wheat at home.” A meatless dish makes it more affordable as well.

Kutia
‘It’s like porridge but more sticky than watery,’ says Anastasia Kaissidis, a Russian mother of two

In other places like Greece or Macedonia, sugar is sometimes added as a sweetener, as well as other dried fruits and nuts like pomegranate seeds or walnuts. The dried fruits and nuts not only provide textural and colour contrast but they can be used to decorate the top of the dish in the shape of a cross or initials of the deceased.

Kutia is steeped in the rituals of a Russian Christian Orthodox funeral. The family of the deceased – “usually the women”, Kaissidis says – are responsible for making it for the people who drop by to pay their respects. “After the burial, people will come to the family’s house, so they will prepare food. Traditionally, kutia is the first dish we eat before anything else,” Kaissidis explains. “It will be scooped into small bowls so that everyone can have some. You just need a little taste and after that, you can eat the rest of the food on the table.”

Koliva
Koliva is the Macedonian version of Kutia – both feature prominently following death in Christian Orthodox cultures

The dish also has a symbolic meaning. “In Christianity, we believe life is eternal and we celebrate resurrection,” Kaissidis explains. “The wheat symbolises new life because it must be buried before it can grow again, else it will just rot. The honey or sugar symbolises that life will be sweet in heaven.”

Georgi Velkovski, a Macedonian living in Belgium knows this communal dish as koliva. He describes it as a sticky, sweet paste that is a bit bland and not to his taste, “like eating a piece of bread if you squeeze it and chew on it”.

“The family of the deceased would serve it on a plate along with tasting spoons. They would go around and offer koliva to visitors. People would take a spoonful of the dish and place the dirty spoons in a separate cup or container. This way, everyone is sharing the koliva,” he explains.

Anastasia
Anastasia Kaissidis, a Russian mother of two, talks about grief food in Russian Orthodox communities

When people don’t have the space to accommodate mourners in their own

houses, they may go to a cafe or restaurant. “When my grandmother died, there were about 20 close family members attending the funeral and they came from everywhere. Instead of having the meal at home, we pre-ordered food from a cafe, including kutia, because it was easier,” Kaissidis shares.

Although koliva is simple, cheap and filling, neither Kaissidis nor Velkovski will make or eat it outside of funerals – although other people in the Russian or Macedonian community may serve it during religious celebrations or even Christmas.

For Kaissidis, this is a sacred dish that is associated with funerals and not something to make for a casual Saturday brunch. “Sometimes, I make my kids porridge with honey because it is kid-friendly. I suppose it is similar to kutia, just a bit waterier but I wouldn’t call it kutia,” she says with a laugh.

Communal cooking in Sri Lanka

While the Orthodox Christian community communes with one sacred dish after a funeral, in Sri Lankan Buddhist culture, everyone comes together to cook full meals in support of the bereaved family.

When there is a death in the community, particularly in villages with close-knit communities, someone will take charge and start by collecting funds. “People give based on their finances and this collection will be used for the rites,” explains Zinara Rathnayake, a journalist and social media manager from Sri Lanka. On the last day of the ceremony, Sri Lankan Buddhist families typically cremate the bodies of the deceased although some may also choose a burial. This is then followed by a feast or ceremony called Mala Batha which is a meal provided to people who came over to pay their respects to the deceased.

Zinara
Zinara Rathnayake says a Sri Lankan funeral feast is ‘a feast for the living’ but also, some believe, a ‘feast for the spirit who might still be lingering’

“If there’s enough space in the family’s house, they will cook the meal inside. If not, they will pick a house with a large garden to cook outside with a makeshift fire stove,” Rathnayake explains.

While this is a feast for the living, some people believe it is also a feast for the spirit who might still be lingering; this is a way to feed them before they head off to the other world.

The meal features food that people cook and eat daily – like dahl, dried fish curry, potato dishes, brinjal (aubergine) dishes, leafy green salads and papadums – rather than symbolic, funeral-specific dishes. These dishes are meatless. Meat is often considered “impure” so a vegetarian diet is de facto for periods of mourning.

This will vary from villages and communities, but people instinctively know the role they need to play; they may have done something similar for weddings or festivals. “The men might go off to buy the provisions and others will bring a large pot with utensils. Someone will cook rice, others will chop the vegetables. There is a mutual understanding,” says Ratnayake.

Sri Lanka vegetable curry
Vegetable curry is often served following a funeral in Sri Lanka

Following the Mala Batha, neighbours will continue to support the bereaved family by cooking for them. “The food part is taken care of by the community because the family is not in a state where they can cook,” says Ratnayake. “People will make potato curry or grated coconut sambol, buy large boxes of biscuits, make tea or coffee.” As Ratnayake explains, this is partly because traditionally, there is no concept of freezing and reheating food here; food is eaten on the same day it is cooked.

Offerings to the deceased in Malaysian-Chinese culture

Sometimes, the food that is prepared during funerals is not for the living. Instead, each element of the meal represents the deceased’s journey into the afterlife.

Chin (who asked not to use her real name to protect her family’s feelings) has a Chinese-Buddhist-Taoist background and lives in a country town in Australia. When her mother passed away in Malaysia, she became aware of the numerous rituals she had to fulfil and the symbolic food she had to place by her mother’s altar.

“We had her wake at a funeral centre,” Chin explains, “It was a three-day wake followed by a burial. There was someone at the centre to guide us on rituals and procedures, including what to wear. Most modern Chinese people don’t know what to do for these rituals!”

Malaysia-China funeral feast
Dishes at a funeral in Malaysian-Chinese communities include cooked meats, particularly a boiled chicken placed at the centre of the table and representing the spirit’s flight to the beyond

The standard dishes for Chinese funerals in Malaysia include cooked meats: a roasted pig symbolises eternity and good luck, a boiled chicken represents the spirit’s flight to the beyond and a roast duck symbolises protection for the spirit as it crosses the three rivers (Gold River, Silver River and the Life-Death River) that are synonymous in Chinese-Buddhist belief with giving and supporting life. Everything is served with rice, which represents family and respect.

Among the dishes that Chin prepared for her mother’s funeral was a stir-fry vegetarian dish called Buddha’s Delight, plus her mother’s favourite tea and fruit.

Buddha's delight
Buddha’s Delight, a stir-fried vegetarian dish

“There had to be five different colours of fruits, so we had green grapes, yellow pears, red apples, white peaches and black Chinese chestnuts,” Chin explains. The idea is to invite the deceased to eat along with the living.

One of the foods that is closely associated with Malaysian-Chinese funerals is pink and yellow steamed buns. These buns also make an appearance during the Hungry Ghost Festival; a month-long period when the Chinese community makes offerings to appease and honour spirits that roam the earth. Like koliva, these soft buns are also made with pantry staples – flour, yeast, sugar, baking powder, and shortening – and steamed, since most Southeast Asian kitchens do not have ovens.

Pink and yellow steamed buns
Pink and yellow steamed buns are frequently served at the feast following a Malaysian-Chinese funeral

Family members are also encouraged to offer food that the deceased used to enjoy. “On day seven, we laid out the dining table with my mother’s favourite food because symbolically, this is the last meal we are giving to her spirit,” Chin says. The idea is that after this feast, the spirit has to leave our world.

During this time, Chin and her family were expected to stay in their rooms from 10pm to 2am.

Afterwards, “we threw away the whole banquet because it is [considered] bad luck to eat it”, Chin says. “This is the part I did not like because it’s so wasteful.”

The “bad luck” is a mix of superstition – not wanting to eat something that a spirit has feasted on; and concern about food hygiene – not eating something that has been sitting at room temperature in the tropics.

Chin understands the purpose of rituals, but also finds some of them “ridiculous”.

“I rolled my eyes a lot but we had to ‘do the right thing for the deceased’. When my father passed away, my mother did the same thing for him and it was clear that this is what she wanted too.”

Complete Article ↪HERE↩!