More and More, I Talk to the Dead

By Margaret Renkl

After my mother died so suddenly — laughing at a rerun of “JAG” at 10 p.m., dying of a hemorrhagic stroke by dawn — I dreamed about her night after night. In every dream she was willfully, outrageously alive, unaware of the grief her death had caused. In every dream relief poured through me like a flash flood. Oh, thank God!

Then I would wake into keening grief all over again.

Years earlier, when my father learned he had advanced esophageal cancer, his doctor told him he had perhaps six months to live. He lived far longer than that, though I never thought of it as “living” once I learned how little time he really had. For six months my father was dying, and then he kept dying for two years more. I was still working and raising a family, but running beneath the thin soil of my own life was a river of death. My father’s dying governed my days.

After he died, I wept and kept weeping, but I rarely dreamed about my father the way I would dream about my mother nearly a decade later. Even in the midst of calamitous grief, I understood the difference: My father’s long illness had given me time to work death into the daily patterns of my life. My mother’s sudden death had obliterated any illusion that daily patterns are trustworthy.

Years have passed now, and it’s the ordinariness of grief itself that governs my days. The very air around me thrums with absence. I grieve the beloved high-school teacher I lost the summer after graduation and the beloved college professor who was my friend for more than two decades. I grieve the father I lost nearly 20 years ago and the father-in-law I lost during the pandemic. I grieve the great-grandmother who died my junior year of college and the grandmother who lived until I was deep into my 40s.

Some of those I grieve are people I didn’t even know. How can John Prine be gone? I hear his haunting last song, “I Remember Everything,” and I still can’t quite believe that John Prine is gone. Can it properly be called grieving if the person who died is someone I never met? Probably not. But when I remember that John Prine will never write another song, it feels exactly like grief.

In any life, loss piles on loss in all its manifestations, and I find myself thinking often of the last lines of “Elegy for Jane,” Theodore Roethke’s poem about a student killed when she was thrown from a horse: “Over this damp grave I speak the words of my love: / I, with no rights in this matter, / Neither father nor lover.”

Why, when we grieve, can it feel so urgent to make others understand the depth of our loss, even when we have no rights in the matter? I think it must be because people so often fail to honor grief at all. We talk of “processing” loss, of reckoning with it and moving on, as though bright life could not possibly include an unvanquishable darkness. Our culture persists in treating mourning as an unpleasant process we are obliged to endure while waiting for real life to restore itself.

But God help anyone who appears to move on too quickly, or too slowly, for the grief police will be coming for them. They may be accused of giving their late spouse’s clothes away too soon, or of mourning excessively a relationship that seems too far down the grief ladder to justify such a response. People have opinions about how others should manage loss.

Just before my mother died, I heard her say to a stranger, “My husband died nine years ago, and every night I tell God I’m ready to see him again.” Four days later, she got her wish.

I’m in no hurry to join my beloved dead, but like my mother before me, I am spending more and more of my days in their company. As my father was dying, and taking so long to die, I feared that the memories of his brutal last years would overwhelm four decades of happy times. I worried that the father who followed me into my own old age would be the fretful, pain-wracked old man and not the loving optimist who had always been my surest source of strength in an indifferent world.

It didn’t turn out that way. Next month he will have been gone for 20 years, but he is as real to me today as he was on any day of the 41 years we shared on this side of the veil.

I read a newspaper article reporting that NASA will be dismantling the Saturn rocket that rises above the Alabama welcome center on I-65 South, and I remember the model Saturn rocket, taller than my 10-year-old self, that Dad and I built together from chicken wire and papier-mâché. I hear a Cole Porter song on the radio, and I remember my parents dancing in the living room. I see a blue jay perched in the pine tree just outside our family room, and I recall how often I was told that “blue jay” is the first bird I learned to call by name. There were so many blue jays in so many pine trees back in those days when I was still a cherished late-born child, and my parents were still explaining the world to me.

It’s the same with all my lost beloveds. Reminders take every possible form — the feel of pine needles underfoot, the scent of a passing woman’s perfume, the tail end of a song on a coffee shop radio, a letter tumbling out of a long-unopened book, the taste of boiled peanuts, salty and warm. The reminders loop between past and present, between one lost loved one and another, a buzzing sweep of sensations and memories and time. I keep searching for the right metaphor to convey what I mean. Is it like a braid? A web? A shroud?

Finally the word comes to me: It’s a conversation. Every day, all day long, everyone I’ve ever loved is gathered around the same table, talking.

Ten years on, I rarely dream about my mother anymore, but in the dreams where she does appear, it’s the same as before — the ordinariness of life, the rush of relief I feel, her blithe unawareness of my suffering. I walk in the door, and there she is, there they all are, no happier to see me than they would be if I’d only walked in from another room in the same house. In my dreams, as in my waking life, the dead are still here, still talking to me.

Complete Article HERE!

If you could, would you want to know when you will die?


Would you want to know when you’re going to die? I’ve thought about this question quite a bit recently.

>Several months ago, I picked up a new novel titled “The Measure” by Nikki Erlick, which opens with quite the plot twist. One morning, everybody on the planet (ages 22 and up) wakes up to a surprise at their front door: a small wooden box, personally engraved, with the words: “The measure of your life lies within.” Each box contains a string whose length determines the length of the recipient’s life.

The characters now face a gut-wrenching decision. Do they open the box and find out how long they will live? If yes, what will they do with that knowledge? If not, which means they’re choosing not to know, will they live any differently?

The question is not entirely a hypothetical one. A few months ago, out of a morbid curiosity, I visited Death Clock, a website that labels itself the “Internet’s friendly reminder that life is slipping away … second by second.”

I entered the month, day and year of my birth, my gender, mood (from pessimistic to optimistic), whether I smoked tobacco, and my height and weight. I hit the submit button, and a second later came my answer: “Your personal day of death is Wednesday, April 23, 2031.”

If true, I had nine years to live; I’d be a few months short of my 74th birthday.

About the same time, my sister, who is 60 and being treated for advanced ovarian cancer, was told by her oncologist that time may be running short. Of course, it was only a doctor’s guess and her current chemo regimen has significantly improved her tumor markers. Regardless, she’d be considered a “short stringer,” one of those who will die before their time, in “The Measure.”

I’ve wanted to be a “long-stringer,” ever since I had cancer in my 20s, but thanks to Erlick’s book and now my sister’s illness, I’ve recognized that focusing on exactly when my time is up is unknowable and probably not particularly good psychically. So I’ve decided instead to focus on how I want to spend those years, not just the number of them.

In any case, longevity doesn’t come with a guarantee of good health, and those “bonus years” may hold less value if confined to home or suffering from debilitating conditions.

As the characters in “The Measure” discover, a long string (meaning many years of life) does not equal happiness. And while the characters who get short strings initially feel as though they’ve come up, well, short. gradually, they find greater meaning and richness in their comparatively fewer days. Their newfound knowledge alters their perspective on what matters.

One of the novel’s characters, Nina, who is married to one of the short stringers, says: “It’s easy to look at our time together and think that we were so unlucky. But isn’t it better to spend ten years really loving someone, rather than forty years growing bored or weary or bitter?”

After her partner, Maura, dies — indeed early — Nina explains that their relationship “felt deep, and it felt whole, despite its length. It was an entire, wonderful tale in and of itself.”

All this brings me back to my little sister, Julie, and the deep angst I feel at what may turn out to be a premature death. I want her to live forever. (Maybe not forever, but, please, longer than me!)

To help me with these stomach-wrenching feelings, I’ve turned to friends, my therapist, a higher-dose antidepressant, meditation, ketamine and Elisabeth Kübler-Ross’s work on the five stages of death and dying. All of which work — some.

Oddly enough, “The Measure” has provided me with a greater sense of peace and acceptance than I’ve found anywhere else. Don’t get me wrong, I still hate that Julie is likely to live fewer years than her older brother. But I’ve watched and learned as Julie has lived as big a life as anyone could imagine. This proved true before her diagnosis but even more so in recent years.

Soon after her diagnosis, Julie emailed me to say that she’d already had a full life, even if it’s cut short. Since then, she has focused on what matters to her — seeing her daughters graduate from college, celebrating 35 years with her wife, going away on trips with the whole family, visiting with close friends.

In other words, Julie has fine-tuned those relationships that mean the most to her and not dwelled on those that she may miss out on in the future.

I remember thinking at our recent Christmas dinner about a quote attributed to Ralph Waldo Emerson: “It is not the length of life, but the depth of life” that matters. And then I thought about what Nina, in the novel, tells us: “When we think about the greatest love stories ever written, we aren’t judging them by their length … . [A]nd even though I’ve been given more chapters than Maura, her pages were the ones you couldn’t put down. The ones that I’ll keep rereading, over and over, for the rest of my life. Our decade together, our story, was a gift.”


It’s not about how many chapters we’ve lived but how rich and exciting those chapters are. Or, as the late poet Mary Oliver wrote, “Tell me, what is it you plan to do with your one wild and precious life?”

For starters, I’m not going to listen to the Death Clock. I don’t want to know when I’m going to die — but I do want to live each day as though it could be my last.

Complete Article HERE!

Financial planning tips for every family caregiver

By Rebecca Holcomb

Taking care of family in the best of times can be difficult. Some estimates claim 18.2% of the US adult population, or more than 43 million Americans provide unpaid in-home care for an adult relative. The numbers go higher as the cared for get older or when Alzheimer’s and other forms of dementia are taken into account.

Caring for an ailing family member or one at the end of life can be daunting. Exhaustion, an endless routine, and a constant need to be ready can drain even the healthiest caregiver. There have not been a lot of studies on what many are calling ‘caregiver syndrome.’ However, a recent survey found that 70% of all caregivers in retirement age, die before the person they are caring for.

The mental, physical and spiritual strain on the body can be so critical that a caregiver’s life can drain away while trying their best to care for their loved one.

With this in mind, here are some tips to help family caregivers do the near impossible.

Routine Conversation

When a loved one gets sick and needs long-term care, dealing with the ramifications usually falls on the next of kin. If the person is married, it’s their spouse. Or, in the case of elderly parents, it might be a child. A sibling might step in with a brother or sister who gets sick.

End-of-life choices and financial decisions can significantly impact your health and the health of those you care for.

Some of the topics that need to be discussed repeatedly as circumstances change are:

What part do you want the caregiver to play in tending to your financial assets

  • ? If you don’t want them to play a role in your finances, who will facilitate those decisions?
  • Where do you keep your estate documents? Have they been updated to reflect your current last wishes?
  • If you are sick and need long-term care, how can the caregiver make you most comfortable? What resources are available to help ensure you’re well taken care of?
  • How do you want to be remembered?

If an illness runs long, the person being cared for may change their minds repeatedly on the above questions, especially if cognitive decline is a factor.

Dementia and Other Cognitive Issues

One area that can be prevalent in long-term care is the incidence of cognitive decline. This is the gradual deterioration of mental faculties due to neurological or physiological disturbances.

Dealing with these situations can be arduous as they often take years to take full effect. Getting important issues taken care of beforehand is essential to ensuring your loved ones get the care they need.

Some factors to consider if a loved one is showing signs of cognitive decline are:

1. Financial Power of Attorney (POA): Ensuring that someone can make medical and financial decisions for your loved one is crucial to their end-of-life care. In cases of cognitive decline that doesn’t respond to medication, a loved one’s ability to choose wisely for themselves may suddenly disappear. If this happens and a POA isn’t already in place, you’ll have to file a conservatorship instead.

2. Medicaid/Medicare : Medicaid is a government medical and dental insurance program for low-income families. Medicare is a government insurance program for individuals aged 65 and older. If your loved one qualifies for one or both of these programs, they can significantly impact the financial toll that long-term care can take on your loved one’s assets. Apply for them as soon as you think your loved one might qualify.

3. Alternatives to state-led programs: If your loved one doesn’t qualify for Medicaid, paying for long-term care can be expensive. Look for ways to cut those costs down.

  • Hire a part-time caregiver
  • Hire a family member
  • Ask your loved one’s doctor to prescribe a nurse
  • Take advantage of technology and community resources

Scheduled Breaks

One area that caregivers often overlook is their own mental and physical health needs. Even if your loved one has everything in order, managing it can take a toll. Scheduling routine breaks for yourself is essential to ensure you stay healthy and happy despite caring for an ill family member.

Some ways you can make sure you and your loved one are cared for are as follows:

Schedule a CNA or Nurse: Two to three times a week, allow for a medical professional to take over the job you usually tend to. A nurse or CNA ensures your loved one is cared for (if they are at home) and allows you to attend to other errands or take a break.

  • Involve a trusted family member: Enlisting help from a sibling or other family member can give you a much-needed reprieve. This once-a-week break (or more) is crucial to keeping your mental health intact.
  • Transition to Assisted Living: Despite most people not wanting to put their loved one into a facility, sometimes a transition to assisted living can help ease the pressure of constant, 24/7 care.

No matter how you handle it, scheduling time to rejuvenate can help ensure you are around during your loved one’s last years.

Dealing With Death

No matter how long your loved one is cared for, death is the great equalizer. Planning a funeral when a loved one has passed away can be overwhelming, especially considering most people only plan one or two funerals during their lifetime.

Taking time to grieve is critical to ensuring wise decisions are made concerning the funeral and aftercare for your loved one’s estate. Before making any choices about the funeral, read over your loved one’s legal documents, including their last will and testament. Doing so will give you time to understand and ensure your loved one’s final wishes are considered.

Once you have those in place and the funeral is over, the next step is dealing with their estate. This situation can be overwhelming, especially if their legal documentation isn’t complete or they have a large estate to distribute.

When partitioning your loved one’s estate, have their legal documentation handy to ensure you’re giving the right part of the estate to the right person. 35% of Americans say they’ve experienced family conflict over an estate that was mishandled or didn’t have an estate plan set up ahead of time.

Considering these situations can help family caregivers ensure they have a much easier time dealing with end-of-life care for loved ones and to deal wisely with estate planning issues that may arise after a loved one dies.

Complete Article HERE!

How different cultures deal with grief and mourning

A group of colourfully dressed women mourning a death in India.


Grief is a universal emotion. It’s something we all feel, no matter where we come from or what we’ve been through. Grief comes for us all and as humans who form close relationships with other people, it’s hard to avoid.

Studies of grieving brains – be it scans of the brain regions which process grief, or measures of the stress hormone cortisol that is released in grief – show no differences in relation to race, age or religion. People of all cultures grieve; we all feel sorrow, loss, and despair. We just do it – and show it – in different ways.

James Averill, a US professor of psychology, has compared this to sexual feelings which, like grief, are biologically driven but expressed in elaborately different social contexts.

Here are several examples that demonstrate how grief and mourning can look very different depending on where you live and come from.

1. Collective grief is common

When it comes to grieving in the west, the focus is often placed on the individual. People talk about their personal grief, and counselling is usually arranged for just one person – even support groups are attended by individual members. But the reality is that the family – or for many Indigenous people, the tribe – grieves collectively, and in some cultures this is more pronounced than others.

In Hindu families in India, for example, relatives and friends come together to support the immediate family in an elaborate 13-day ritual. A widow ceases to be the head of the household and her place is taken by the wife of her oldest son.

Typical of Native American culture, the Lakota tribe elders use the phrase “mitakuye oyasin”, meaning “we are all related”. The death of anyone in the tribe is felt by all.

Scrolls with names in Chinese script to honour dead relatives.
Scrolls with names in Chinese script to honour dead relatives.

In Tibet, the Buddhist mourning period following a funeral lasts 49 days. During this time the family gathers to make clay figures and prayer flags, allowing for a collective expression of grief.

Collective grief is also the norm in traditional Chinese culture, but here the family also makes collective decisions – which sometimes exclude the dying person. This was seen in the 2019 film The Farewell, which was based on director and writer Lulu Wong’s real life. In the film, a Chinese family discovers their grandmother has only a short time left to live and decides to keep her in the dark, scheduling a wedding in order to gather before she dies.

2. Grieving times vary by culture

After a bereavement, a steady return to normal functioning can typically take two or more years. Experts no longer talk of “moving on”, but instead see grief as a way of adapting to loss while forming a continuing bond with the lost loved one. But again, this varies from culture to culture.

In Bali, Indonesia, mourning is brief and tearfulness is discouraged. If family members do cry, tears must not fall on the body as this is thought to give the person a bad place in heaven. To cry for too long is thought to invoke malevolent spirits and encumber the dead person’s soul with unhappiness.

People walking along road in colourful clothing.
Traditional funeral and cremation ceremony in Ubud in Bali, Indonesia.

In Egypt, tearfully grieving after seven years would still be seen as healthy and normal – whereas in the US this would be considered a disorder. Indeed, in the west, intense grief exceeding 12 months is labelled “prolonged grief disorder”.

3. People like to visit the body

The way people interact with the dead body also differs culturally. For example, between the death and the funeral, the Toraja people on the island of Sulawesi, Indonesia, treat their relative as if they were ill rather than dead, by bringing them food and keeping them company.

Women Catholic devotees wearing traditional mourning dress
Women Catholic devotees wearing traditional mourning dress.

Europe has its own customs. In the UK until the mid-20th century, along the Yorkshire coast, the lying-out of the body was done by women of the village. Friends and family would come to view the deceased, pay their respects, and recall memories of the person. This practice continues in some countries.

In Italy, for example, a temporary refrigerated coffin is delivered to the family home so people can bring flowers and pay their respects in the immediate aftermath of the death.

4. Signs from above

In the UK, some people believe that white feathers are a message from heaven, though this is often dismissed as childlike magical thinking. But in many African societies, spiritual connection to the deceased is considered normal and very real.

In sub-Saharan Africa, the traditional belief is that the dead become spirits but remain in the living world on Earth. They are thought of as the living dead. The spirit may appear in dreams in their human form.

Voodoo altars representing the spirits of the dead people.
Voodoo altars representing the spirits of the dead people in Benin, West Africa.

5. Sending on the spirit

The Māori people indigenous to New Zealand set aside time to grieve and mourn. They perform rites for the dead in a process called “tangihanga”. First, rituals send on the spirit, then the body is prepared by an undertaker, often helped by family members. The body returns to the family home for the family to reminisce in celebration.

Mourners with wreaths on their heads.
Throughout the tangihanga, mourners dress in black and wreath their heads in kawakawa leaves.

Elaborate rituals follow, including dances and songs and finally a farewell speech. Traditional artefacts including clothes, weapons and jewellery are displayed. After the funeral, there is a ritual cleansing of the deceased’s house and feasting, before an eventual unveiling of the headstone.

Complete Article HERE!

I Helped My Mother To Live and Later Die

— After begging her mother to live longer, this author later honors her mother’s wishes for how she wanted to be treated at the end of her life

Kathleen and her mother, less than two years before Mary Elizabeth’s death

By Kathleen M. Rehl

“Please don’t die now, Mom! I can’t handle two funerals back-to-back.”

In a panic, I squeezed my mother’s hand as I sat beside her bed. The hallway’s stark white light streamed through her doorway. Announcements crackled over an intercom as an equipment cart clattered past her room. Mom’s roommate moaned in her sleep before returning to rhythmic snoring.

Then, finally, a sweet-faced nurse’s aide said I could stay beyond regular visiting hours. Staring intently before she spoke, Mom said, “Your father came to me in a dream last night and told me it was time to let go and be with him again.”

Mom Loved Her New Life

Flashback to Dad’s death from colon cancer, a few days after his 80th birthday. After he passed, Mom moved over 1,000 miles from her house on a dusty, isolated road to live near me and my husband, Tom, in Florida.

She blossomed like the red roses she cared for near her apartment.

Leaving sadness and grief behind, she chose a sunny independent living apartment in a continuing care retirement community (CCRC). There she blossomed like the red roses she cared for near her apartment.

Mom made new friends fast, joined afternoon card games, shelved books at the community library, tended a meditation garden, participated in church activities, baked yummy chocolate chip cookies to share, traveled to visit a few relatives across the country, and enjoyed an occasional happy hour glass of sangria with girlfriends.

In addition, Tom and I included Mom in many local activities. “I love my new life here,” she often said. Mom’s newfound happiness lasted almost two years.

Life Changed

A serious fall interrupted Mom’s joyful journey. After spending Thanksgiving with Tom and me, my mother fell in her apartment, shattering her femur. Mom’s next-door neighbor’s frantic phone call brought the ambulance.

At the hospital, we authorized emergency orthopedic surgery. A few days later, she transferred to her CCRC’s skilled nursing care wing, with weeks of physical therapy scheduled. Her spirit was crushed.

I was devastated, of course, but the knockdown punch to the gut hit in early December. That’s when my husband visited his doctor, feeling unusually tired, with jaundiced skin and abdominal pain. He called me at work later, saying he’d been admitted to the hospital for specialized testing.

I bolted from my desk and didn’t return to it for many weeks. Meetings and phone calls with a medical staff filled our coming days. By week’s end, we knew his diagnosis was a callous killer — late-stage inoperable and untreatable liver cancer.

His prognosis was death within a few months. My 72-year-old husband chose home hospice care rather than a war he couldn’t win.

Mom Rallied

“All right! I won’t die now,” Mom said from her nursing home bed when she understood Tom’s death sentence. And that’s just what she did.

Mom mustered her petite body’s life force, willing her health to improve.

She completed prescribed physical therapy, navigated with her fractured leg plus a walker, and moved back into her apartment with daily assistance from an aide and friends.

I boomeranged between caring for my mother and my husband. Then, Tom’s progressive downward spiral gathered speed while Mom’s condition stabilized. He died in my arms on February 12, 2022 with my brother beside us both.

A packed church celebrated my husband’s life. Mom sat near me as I stood in the funeral’s receiving line, both brokenhearted.

Years Before, We Talked About Care Preferences

“I don’t want you kids to have to pull the plug on me someday,” Mom said over a decade before.

Several years before Dad’s death, our family discussed health care preferences if we experienced a severe illness. My mother had once carried the burden of being the one who authorized disconnecting her aunt and mother from life support after each suffered debilitating strokes.

“I didn’t know what they would have wanted because we never talked about topics like that back then.”

“I didn’t know what they would have wanted, because we never talked about topics like that back then,” she said. Mom felt she “killed Aunt Frances and your grandmother.”

Dad, Mom, Tom, and I completed the Five Wishes advance care planning document years before we updated our estate plans. It’s easy to understand, covering one’s personal, spiritual, medical, and legal wishes at the end of life.

In addition, it identifies the person designated to make care decisions when you can’t do it yourself. After my father passed, Mom revised her plans, naming me the primary health care agent.

The Beginning of Mom’s Ending

After my mother told me about her dream of Dad, she didn’t speak of that vision again until Tom died. Then her health plummeted within a month. Complications put her in the hospital again.

Two older adults getting off a bus. Next Avenue, caregiving for mom
Mom and Tom in St. Petersburg

That’s when she repeated that Dad was preparing to welcome her. She wanted to go. Tearfully hugging my mother, I told her it was OK. I understood. I wouldn’t hold her back.

They requested my mother’s advance health care documents when she was admitted to the hospital. I gave them a copy of her Five Wishes form, verifying she didn’t want life support treatment to keep her body alive when she was close to death.

Even though this paperwork was accepted and filed, Mom’s plans were almost upset when she went into immediate cardiac arrest in the middle of the night. Finally, exhausted, I left her hospital room to go home for a shower and a few hours of sleep. But a hospital nurse called after midnight, saying they were taking Mom to the intensive care unit (ICU) for life support.

“No! That’s not what she wants! Read her advance care directives!” I yelled over the phone. “I’ll be there as fast as I can. Please don’t move Mom!”

I pulled on my jeans and raced for the car, driving in the dark over the speed limit. I ran to her room with a copy of Mom’s Five Wishes form. Assistants started rolling her bed into the hall on the way to the elevator and the ICU.

Committed to Her Wishes

The nurse said she needed to get the doctor. He looked over the forms, stepped away for a few minutes, and returned to ask what I wanted. “Plain palliative care, please!” I answered.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care.

Fast forward. That’s precisely what happened, with my mother moved into a private hospice care room. My brother and I were allowed to camp with her in that room for the remaining three days of her life.

We facilitated a few short phone calls with her family, sang to her, read her favorite scriptures, and monitored her morphine. Then, before slipping into her final slumber, she told us of a clear new vision, where she saw relatives waving from across a bridge and preparing for a party.

“They have to wait for me to cross over that bridge before starting the festivities,” she said. Tom and my Dad were in that welcoming crowd, along with her mother and aunt. She finally said, “Awesome!” as she crossed her bright bridge.

Most Don’t Have End-of-Life Conversations

In June 2020, the National Poll on Healthy Aging was conducted for the University of Michigan’s Institute for Healthcare Policy and Innovation. A sample of U.S. adults aged 50–80 was asked about their advanced care planning.

Nearly two in five adults aged 50–80 had not discussed their health care preferences if they experienced a severe illness. More than two in three hadn’t completed an advance directive and durable power of attorney documents.

More than half of the folks who had not talked about their care preferences with others or completed related legal documents said it was because they needed to take the time to do this.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care. I hope my story encourages conversations with you and your loved ones. It’s a precious gift you can give them.

Complete Article HERE!

When to Move a Patient to Hospice

By Joseph Shega

As health care professionals, we innately want what’s best for patients. Of course, in order to determine the best possible treatment path, we must work together—not just with the full health care team, but with patients and their loved ones as well. Defining the goals of care requires deeply personal decision-making, and it’s our responsibility to help patients and their families understand their choices, and to honor their wishes with compassion
and respect.

For some patients with serious illness, especially those requiring home health care, there may come a time over the course of their health care journey when curative and restorative treatment no longer aligns with their values and end-of-life priorities. For these patients, hospice can provide tremendous relief and the kind of support they need at the right time.

To be clear, entering hospice is not about losing hope—it’s about giving patients a renewed sense of hope for
how they’ll be able to spend their final chapter of life.

Understanding the Benefits of Hospice Care
First, it’s important to distinguish the differences between home health and hospice care. The two modalities of care certainly share some similarities: Both are aimed at improving quality of life, allowing the patient to remain at home and receive important physical and psychosocial care while also helping prevent or reduce the need for hospitalization. However, each approach is meant to address distinct patient populations with unique needs
and goals.

Unlike home health care, which is intended to help patients recover from injury or illness or progress toward improved functionality, hospice care is for those with advanced illness for whom curative treatments are no longer effective or preferred. Patients are eligible when they have a prognosis of six months or less if their disease or illness runs its natural course, as certified by a physician; this approach to care is squarely focused on improving quality of life and prioritizing patients’ and families’ wishes during whatever time they have left.

Routine hospice care takes place wherever the patient calls home—a private residence, nursing home, assisted living community or residential care facility. Daily care is provided by a family caregiver, friend or private duty caregiver who is supported by an interdisciplinary team of hospice experts, including nurses, aides, physicians, chaplains, social workers, volunteers and bereavement specialists, all of whom specialize in compassionate end-of-life care.

Common hospice services include the delivery of medications, equipment and supplies necessary to manage the patient’s diagnosis. Covered by the Medicare Home Health Benefit, these services are— importantly—provided at no cost to the patient or family. Medicare also covers continuous, inpatient and respite care for hospice patients. In fact, hospice is the only Medicare benefit designed to titrate whatever care the patient needs in order to keep them in their setting of choice.

Home health services, on the other hand, do not cover inpatient stays if symptoms become unmanageable at home. Caregivers of those in hospice also receive access to additional layers of psychosocial support. Simply put, hospice care gives patients and their loved ones the peace of mind that comes with knowing their final days will be filled with specialized support and comprehensive, round-the-clock comfort care, without undue economic burden.

Identifying Hospice-Eligible Patients
Home health is ideal for patients who are stable or improving, but when a home health patient declines or fails to achieve therapy goals, it can take a significant emotional and financial toll on the individual and
the family.

Identifying hospice-eligible patients earlier in the progression of their illness can have a measurable impact on their quality of life and medical expenses. A 2020 Trella Health study found that hospice patients overall benefitted from significantly fewer unnecessary hospitalizations and reduced health care costs compared to patients who did not receive hospice.

This was especially true for patients who were referred to hospice earlier in their disease course (receiving at least three months of care) compared to late hospice patients (receiving fewer than two weeks of care). Patients who received early hospice care were 10 times less likely to be admitted to the hospital during their final month of life than their nonhospice peers, and emergency room visits were five times more likely for late hospice patients compared to early hospice patients.

That means earlier identification of hospice eligibility can actually help patients remain in their preferred care setting, which plays a large role in quality of life. After all, no one wants to spend more time in emergency departments and hospital rooms than they have to.

If you’re wondering whether a patient may be ready to transition to hospice care, consulting VITAS Healthcare’s hospice eligibility guidelines is a great first step. It may also help to keep these significant predictors of declining prognosis in mind:

  • Reliance on others for help with three or more activities of daily living, such as bathing, dressing, urine or bowel control, moving from one place to another, walking and feeding
  • Shortness of breath or fatigue at rest or minimal exertion
  • Emergency department visits or hospitalizations
  • 10% weight loss within six months or 5% in one month
  • Recurrent falls with injury
  • Decreased tolerance of physical activity
  • Complications related to Alzheimer’s disease/dementia, cardiac or lung disease, cancer or sepsis/post-sepsis syndrome

When a patient and their caregivers are struggling with these issues, it may be time to consider the transition to hospice.

Facilitating the Transition
For hospice-eligible patients, goals-of-care discussions are so important, yet many home health care professionals may feel ill-equipped to initiate these conversations. As advocates for patients’ well-being, it is incumbent upon us to speak up and present them with their care options. Keep in mind that an informed patient armed with choices and an understanding of their current health status ultimately feels more in control.

It’s important to take an approach that’s informative, but also empathetic and open to hearing the patients’ wishes and concerns. This should be a compassionate two-way dialogue. You may wish to broach the subject with open-ended questions, such as, “How has your health changed over the last year?” or, “What are your most important goals for your care?”

At VITAS Healthcare, we recommend the ‘SPIKES’ approach to ensure goals-of-care discussions are as patient-centered as possible and firmly rooted in respect:

  • Setting: Choose a private, comfortable and non-threatening atmosphere
  • Perception: Uncover what the patient and family think is happening
  • Invitation: Ask the patient what they would like to know
  • Knowledge: Explain the disease and care options in plain language
  • Emotion: Respect feelings and respond with empathy
  • Summarize: Recap and decide next steps

Home health care professionals who care for patients with advanced illness are uniquely positioned to shape patients’ end-of-life experience by helping them get the right care at the right time in their disease course.

Complete Article HERE!

Dignity in death

— What is voluntary assisted dying

Voluntary assisted dying is a way to take control over death.

By Elissa Napier

Despite the taboo around VAD, the procedure has become legal in the majority of Australian states, allowing those who are suffering to breathe a sigh of relief as they seek to gain some control back in their life, and put dignity back into death.

Whether or not a person decides to access this service, Hall and Wiley said just knowing it’s available has helped to ease the mind of so many Australians.

What is voluntary assisted dying?

Voluntary assisted dying is a medical service offered to those who are eligible, to successfully end the suffering of someone in the late stages of a terminal illness by taking a prescribed substance to end their life on their terms, and as Wiley said, it’s all about choice.

Eligible people can choose if they want to administer the fatal substance themselves, or have a practitioner do it for them; they can choose when and where they’d like the event to take place, ensuring providing comfort and dignity in death.

VAD was kickstarted in Australia by broadcaster Andrew Denton, who watched his father suffer a “drawn out, desperate death”. Denton’s charity, Go Gentle, has played a major role in getting VAD laws passed in all Australian states.

So, what are the eligibility requirements?

A person must be:

  • diagnosed with an advanced disease or medical condition that will cause death within the next 12 months;
  • is suffering from intolerable levels of pain and discomfort;
  • is of sound mind to make the decision;
  • is acting voluntarily and without coercion;
  • is at least 18 years old;
  • an Australian citizen or permanent resident.

The process

Given the gravity of making the decision to undergo voluntary assisted dying, it’s not as simple as just asking for medication.

A person must make three request’s to a medical practitioner within the designated 9-day period. However, once a request is made, and right up until the administration of the fatal substance, there is no obligation for the person to follow through with VAD.

Once the first request has been made, a person will need to undergo a consulting assessment to ensure eligibility, and once the final request has been made, they will then need one final review before the official administration decision is made.

The assessments must be completed by two separate doctors who have received mandatory VAD training.

Source: Queensland Government

Whilst practitioners can refuse to participate based on conscientious objection, the doctor must still inform the patient of the process and provide other practitioners names who can assist; the same goes for religious facilities, they cannot stop or inhibit a practitioner from fulfilling their job at the request of a patient.

Once the process is completed, a touching detail to ensure dignity is maintained even after death, VAD will not be written as cause of death on a person’s death certificate; it will simply state the illness or medical condition the person was suffering from.

By allowing a dying person to take control of their death, dignity can be restored to its fullest.

Complete Article HERE!