Category: Death Education

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I’m Dying Up Here: Books on How to Grieve and How to Die

By JUDITH NEWMAN

[I]’m never going to die. I’m sorry I can’t say the same for you. My role models for how to do death are Jesus and Wile E. Coyote. Yours are other dead people. However, because I’m never going to die, I’m super comfortable with the entire topic, and the fact that I’m late turning in this column on books about death and dying has nothing to do with avoiding the subject.

So an author who suggests the dead are not howling in the abyss but rather hanging out in what she imagines as a pretty “waiting area” — well, that’s an author who’s easy for me to love. Theresa Caputo’s television show, “Long Island Medium,” has been a mainstay on TLC, and in GOOD GRIEF: Heal Your Soul, Honor Your Loved Ones, and Learn to Live Again (Atria, $25.99), Caputo (with her co-writer, Kristina Grish) wants us to know what she has learned from all those years of channeling the dead: “It’s their greatest hope that you learn to heal and carry on.” The dead — or Spirit, as she calls them — are quite chatty and opinionated. Among the things Spirit wants you to know:

Your relationship with your loved one isn’t over; it has merely changed. (Even if the loved one can’t drive you to the airport, if you ask nicely Spirit might “help you get a cab.”) You can let your feelings rule you for short periods of time, but “you must also take active steps to heal.” (Spirit doesn’t like whiners.) When it’s your time, it’s (usually) your time, or at least in the “destiny window” of time. Caputo has a host of practical, rather adorable ideas for honoring Spirit, which often involve giving gifts to others in Spirit’s name.

After a while it occurred to me that if the departed behaved in the loving way Caputo describes, I would like them more when they were dead than when they were alive. No matter; I am entirely agnostic, and still found this book comforting and quite touching. I felt oddly close to my own dead parents as I read along.

Those whose loss is more recent may prefer a less warm and fuzzy approach — more of a “what can I do to get on with my life right now?” book. Resilience is a hot topic these days, and Lucy Hone has written a book about bereavement reflecting both her own research and her own grief. RESILIENT GRIEVING: Finding Strength and Embracing Life After a Loss That Changes Everything (The Experiment, paper, $15.95) begins with Hone’s own tragedy: In 2014, her 12-year-old daughter was killed in a car accident. Hone shows us how to harness the (thankfully common) power of our own resilience to work our way through a horrible loss.

Resilience is not a shield against suffering, Hone suggests. It enables us to feel and to move through emotions like pain and guilt so that we can continue to feel alive and experience happiness. Hone does not buy into the idea that you just feel your feelings and take all the time in the world; what if, like Hone herself, you have other kids at home, a demanding job, and an urgent need to function in the real world? Hone offers concrete strategies for regaining your equilibrium even in the greatest pain. Among them: Choosing where to focus your attention (not on hating someone or something, which consumes energy); taking your time with the body of the one you love (there is no mad rush to bury or memorialize beloved); and re-establish routines, particularly if you have children, who may need that structure even more than you do.

Despite her insistence to the contrary, there is a strong whiff of “just-get-on-with-it” matter-of-factness that may be a little beyond some of us. Patrick O’Malley’s GETTING GRIEF RIGHT: Finding Your Story of Love in the Sorrow of Loss (Sounds True, paper, $16.95), co-written by Tim Madigan, is for those of us made of less stern stuff. O’Malley was trained as a counselor, but when he lost his infant son, and he tried to work through the famous Kübler-Ross stages of grieving — denial, anger, bargaining, depression, and finally acceptance — he felt like a failure. Grief was not linear; it was more of an oscillation. O’Malley wanted to talk about his son, to tell others who his son was, even in the few months he was on this earth. He began to see the wisdom of the writer Isak Dinesen, who noted, “All sorrows can be borne if you put them in a story or tell a story about them.”

O’Malley gives us the tools to tell the story of the deceased: favorite memories, when he or she was happiest and saddest, how you learned about the death, and so forth. Different kinds of loss bring different stories, and different kinds of pain. Telling the story of how you loved and how you lost gives shape and meaning to what first seems to be a meaningless, uncontrollable event.

For a compelling argument for why we have to rethink the wisdom of end-of-life “heroics,” there is EXTREME MEASURES: Finding a Better Path to the End of Life (Avery, $27). The author, Jessica Nutik Zitter, is a physician who specializes in both critical care medicine and palliative care, the yin and yang of medicine. Critical care specialists are taught to save lives with all the technology and machinery at their disposal. Palliative care specialists need the opposite skill set: They have to know how to help a dying person let go. Zitter is trained in both.

Of course, it was not always thus. Dr. Zitter describes her first Code Blue as a resident. She rushes into the room to heroically save the patient, and instead she is asked to resuscitate someone who is clearly dead, or should be. “With each compression, there is a sickening click, which I don’t recognize until I hear someone next to me whisper, ‘His whole chest is breaking,’” she writes. “This man is dead.”

The patient stays dead. But in that moment Zitter realizes that there must be a better way to depart this earth. She also discusses how palliative care can respond to many of the most painful symptoms of dying in a way that care geared toward prolonging life cannot. And why, at the end of life, less is often more compassionate. Like Atul Gawande’s “Being Mortal,” Zitter’s book shows how knowing when to do nothing is as vital to being a good doctor as knowing when to do everything.

As compared to the more philosophical “Extreme Measures,” John Abraham’s HOW TO GET THE DEATH YOU WANT: A Practical and Moral Guide (Upper Access, paper, $14.95) is exactly as nuts and bolts as it sounds. Abraham, a thanatologist and Episcopal priest, writes extensively about advance directives and how to ensure your wishes are abided by; and then, he tells us the least painful and messy ways to go. It may not be easy to read about these methods, but they affirm the idea expressed by a popular button worn by Abraham and other members of the Final Exit Network — “Let me die like a dog” — because anyone who has ever had to euthanize a beloved pet knows how painless and peaceful death can be. Those of us who fear loss of control of our lives more than we fear death will find Abraham’s book edifying. I even appreciate the phrase he uses instead of assisted suicide; he prefers “deliberate life completion.”

Knowing Nina Riggs died shortly after writing THE BRIGHT HOUR: A Memoir of Living and Dying (Simon & Schuster, $25), the story of her experience with metastatic breast cancer, makes this moving and often very funny memoir almost unbearable to read. But that’s because it is not one bromide after the other. It is true, and it might crush you. There is one moment here that says everything about how lonely you can feel when you’ve been told you have a disease. It’s past midnight, and Riggs and her husband are lying in bed: “‘I just can’t wait for things to get back to normal,’ says John from his side of the moon.” Riggs realizes there may not be a “normal” anymore, and reacts with anger, and a growing resolve that we all wish we could achieve: “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other.”

I’ll just say this: You can read a multitude of books about how to die, but Riggs, a dying woman, will show you how to live.

Complete Article HERE!

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This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide

Nursing professor Cathy Campbell aims to expand palliative care practices in places around the world where it’s existed only informally.

By Christine Phelan Kueter

[E]ach week, as she sits at the bedside of dying patients, University of Virginia nursing professor Cathy Campbell remembers the bad old days of end-of-life care during her early nursing practice in the mid-1980s.

Staff didn’t know how to treat patients, their bodies addled by pain and disease, and treatment had less to do with pain management than with beating back deadly illnesses, she recalled. Even for patients who were moments from passing away, there was great reluctance to offer relief with drugs like morphine and Demerol, so as not “to hasten death.” But death in hospital intensive care units, with wires and tubes snaking from patients’ every orifice, was painfully common.

“There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress.

Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

“This is what I want to do, where I want to be,” said Campbell, a nurse for 31 years and a palliative care scholar for 25. “The day of death is one day, but there are a lot of other days to provide support in between.”

But if palliative care has more recently expanded into America’s consciousness, beyond our borders its practice is spotty at best, and absent at worse. That absence is felt most acutely in the world’s poorest, most rural regions where chronic illness and death from diseases like HIV and AIDs, malaria and tuberculosis are common.

In many areas, palliative care is anemic due to too few providers. In South Africa, for instance, the patient-nurse ratio is 417-to-1, a reality that pushes many tasks onto community health workers who provide the majority of rural patients’ care. Among those workers – local individuals, some trained, who do home visits and provide a conduit to nurses in charge of vast geographic territories and literally thousands of patients – palliative care knowledge is even less common.

Most community health workers have basic training in bathing and turning bed-ridden patients; perhaps know how to take vital signs, like blood pressure and pulse; and may, too, know something about vectors of disease transmission for some of the region’s most deadly diseases, including tuberculosis and HIV. But palliative care, Campbell said, is “learned on the fly,” even as it’s an increasingly robust part of their job.

Those gaps in knowledge are due to the fact that palliative care concepts haven’t become fully integrated into overseas’ nursing curricula. It all adds up to a perfect storm, Campbell said, even in this era when the World Health Organization has declared access to palliative care “a human right.”

Given these twin realities, Campbell said, a movement to buttress community health workers’ education, skills and reach is afoot, and Campbell is in the thick of the march. She just received a two-year Fulbright Scholarship to augment the bare-bones understanding of palliative care as it exists in two rural provinces of South Africa and Thailand, and how best to broaden it with the support of community health workers.

Campbell’s years of work as a faculty mentor and researcher at UVA’s Center for Global Health have provided invaluable insight into the many issues and tremendous potential of community health workers in rural communities. This summer, Campbell will mentor a team, in collaboration with colleagues at the University of Venda, of Center for Global Health University Scholars for a fourth year of longitudinal research on community health worker engagement in community care.

With the Fulbright, Campbell and her UVA research assistants will conduct focus groups with 60 rural community health workers across Thailand and South Africa to discuss the cases they see and document how they handle them, in order to determine what types of educational and training programs make the most sense. Their ultimate aim is to expand palliative care practices in places where it’s existed only informally.

Campbell has already observed community health workers’ appetite for training in palliative care in particular – “they’re eager for it,” she reports – and in many cases, the most experienced and seasoned workerss are likely to receive training and education and then return to their peers to train them.

Community health workers, Campbell said, are the linchpin to expanding developing nations’ palliative care reach into the rural communities that need it.

“We can train CHWs to do more, because they’re really the ones doing the work,” Campbell said. “They’re a community treasure.”

Complete Article HERE!

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When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’

Reading age-appropriate books about a pet’s death, like this one for ages 4 to 8, may be helpful in getting a child over the grief.

By JULI FRAGA

[T]he loss of a pet is often a child’s first experience with death. Understanding the unique ways that children view pets and respond to their passing can help parents to ease the grieving process.

Joshua Russell, an assistant professor of environmental science at Canisius College in Buffalo, who has studied the effects of pet loss in children, explained that for many children, pets are more than just animals. “Many kids describe their pets as siblings or best friends with whom they have strong connections,” he said.

In a study of 12 children ages 6 to 13 who had lost a pet, published in the journal Environmental Education Research, Dr. Russell found that even years after the pet’s death, some children still described the loss as “the worst day of their lives.” He also discovered that children come up with unique ways to rationalize their pet’s passing and that the way a pet dies influences how children grieve.

“Children, in particular, have a distinct sense of existential fairness around whether or not an animal lived until an appropriate age,” Dr. Russell said.

Like adults, children more readily accepted their pet’s death when it was expected in some way. For example, children were less affected when they knew in advance that the animal would have a short life span. They seemed to know that a fish or hamster, for instance, would not live as long as a dog or cat. When an animal was sick, they generally agreed that euthanasia relieved the pet of its suffering. If an animal is terminally ill, parents can help prepare the child by talking about the impending loss, as well as the feelings of sadness it will evoke.

This book is written for children ages 8 to 13.

Yet when pets died in tragic and unexpected ways, the loss was harder for the child to accept. “When a pet dies suddenly, it highlights the unpredictability of the world. It tells children that the people and animals they love can die without warning,” said Abigail Marks, a clinical psychologist in San Francisco who specializes in childhood grief.

Of course, a child’s age and developmental level affect how he or she understands death, and a child’s grief looks very different from an adult’s. Children do not always cry or immediately show emotion. But this does not mean they are not deeply affected by the loss.

“Kids under the age of 5 will have a hard time understanding that the pet is gone forever because it’s difficult for them to grasp the concept of death,” said Jessica Harvey, a psychotherapist in San Francisco who specializes in pet grief.

One way young children may express their grief is through play. After the loss of a pet, they may pretend, for example, that a stuffed cat or dog became ill and passed away. Parents can help their children through the grieving process by actively participating in this type of imaginary play.

Reading age-appropriate books about pet death may also be helpful. “Goodbye, Brecken,” by David Lupton, for children ages 4 to 8; “Kate, the Ghost Dog: Coping With the Death of a Pet,” by Wayne L. Wilson, for ages 8 to 13; and “Memories of You,” by Erainna Winnett, for ages 7 to 12, are some examples.

School-age children will often have questions about the animal’s death, and the back-and-forth that ensues may open up larger conversations about love, loss and what happens after we die. When telling a school-age child about a pet’s death, Dr. Marks recommends being honest about what happened. Doing so lets a child know that it is not taboo to talk about death or painful feelings, which can set the stage to process other sorts of loss in the future. Parents should also validate any emotions that arise as the child mourns.

She said that a child’s grief would ebb and flow; they may cry one minute and then resume playing or talking about other things the next minute. Parents should be more concerned if a child has nightmares, increased anxiety or difficulty sleeping. If these symptoms persist, psychological counseling may help.

…and of course, our personal favorite.

Dr. Marks said it was also important for parents to follow their child’s lead. “If they are asking about the details of the pet’s death, it’s a sign that they want to talk about it,” she said. “They are looking for your comfort.”

For many children, it is also important to have a goodbye ritual. “Rituals around death are some of the most meaningful ways we have of recognizing someone’s life, but these ceremonies aren’t societally defined for pet death,” Dr. Marks said. Families can create their own rituals, like having a small memorial service, scattering the pet’s ashes, planting a remembrance tree or creating a photo album.

“This is a way to process the loss and to honor the role that the pet had in your family,” Dr. Marks said.

Complete Article HERE!

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Dying at home: What I learned from my husband’s death

Dr. Donald Low, centre, confers in the lab at the Ministry of Health and Long-Term Care about the results of the Legionella outbreak at Seven Oaks Home for the Aged in 2005.

By Maureen Taylor

[T]he night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.

I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges — or the immense rewards — of caring for my husband at home until his death.

According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 per cent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 per cent) die in a hospital, which isn’t anybody’s first choice.

The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.

But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.

Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.

When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles — they accepted that death was inevitable — but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialed 911.

How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.

In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.

I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him.

Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end — only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.

There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfil at least one of his wishes for his death — that he die at home — was comforting to us. And I thoroughly recommend it to other families if they can manage.

After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.

I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.

Complete Article HERE!

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Dying is happier than you think

[F]ear of death is a fundamental part of the human experience–we dread the possibility of pain and suffering and we worry that we’ll face the end alone. Although thinking about dying can cause considerable angst, new research suggests that the actual emotional experiences of the dying are both more positive and less negative than people expect.

The findings are published in Psychological Science, a journal of the Association for Psychological Science.

“When we imagine our emotions as we approach death, we think mostly of sadness and terror,” says psychological scientist Kurt Gray of the University of North Carolina at Chapel Hill. “But it turns out, dying is less sad and terrifying–and happier–than you think.”

The research, which examined the writings of terminally ill patients and inmates on death row, suggests that we focus disproportionately on the negative emotions caused by dying, without considering the broader context of everyday life.

“Humans are incredibly adaptive – both physically and emotionally–and we go about our daily lives whether we’re dying or not,” Gray explains. “In our imagination, dying is lonely and meaningless, but the final blog posts of terminally ill patients and the last words of death row inmates are filled with love, social connection, and meaning.”

The positive emotions that come with this kind of meaning-making were exquisitely displayed in a recent Modern Love column, written by beloved children’s author Amy Krouse Rosenthal. Rosenthal, who died of ovarian cancer 10 days after her column was published in The New York Times, wrote with profound love and humor about finding someone to marry her husband after she died.

“The column was so touching because it was so positive, so filled with love and hope,” says Gray. “While such positivity seems strange in someone so near death, our work shows that it is actually fairly typical.”

Gray, his graduate student Amelia Goranson, and their co-authors Ryan Ritter, Adam Waytz, and Michael Norton started thinking about the emotional experience of dying when they came across the last words of death-row inmates in Texas, collected by the state’s Department of Justice. They were surprised by how upbeat the statements were, and wondered whether our feelings about death and dying might be clouded by our tendency to zero in on negative experiences.

In their first study, Gray and colleagues analyzed the emotional content of blog posts from terminally ill patients who were dying of either cancer or amyotrophic lateral sclerosis (ALS). To be included in the study, the blogs had to have at least 10 posts over at least 3 months and the author had to have died in the course of writing the blog. For comparison, the researchers asked a group of online participants to imagine that they had been diagnosed with terminal cancer and to write a blog post, keeping in mind that they had only a few months to live.

Using a computer-based algorithm, trained research assistant coders, and online participant coders, the researchers analyzed the actual and imagined blog posts for words that described negative and positive emotions, such as “fear,” “terror,” “anxiety,” “happiness,” and “love.”

The results revealed that blog posts from individuals who were terminally ill included considerably more positive emotion words and fewer negative emotion words than did those written by participants who simply imagined they were dying.

Looking at the patients’ blog posts over time, the researchers also found that their use of positive emotion words actually increased as they neared death, while their use of negative emotion words did not. These patterns held even after Gray and colleagues took the overall word count and number of blog posts into account, suggesting that the increase in positive emotion words was not simply due to the effects of writing over time.

In a second study, the researchers conducted similar analyses comparing the last words of inmates on death row with the poetry of death-row inmates and the imagined last words of another group of online participants.

Again, they found that the words of those who were actually close to death were less negative and more positive in emotional tone than the words of those who were not close to death.

Both the terminally ill patients and the inmates facing execution seemed to focus on things that help us make meaning of life, including religion and family, suggesting that such things may help to quell anxiety about death as it approaches.

Gray and his co-authors acknowledge that the findings may not apply to all people who are approaching death – it’s unclear whether individuals facing a great deal of uncertainty or those who die of old age express similarly positive emotions near the end of life.

Ultimately, the findings suggest that our expectations may not match the reality of dying, which has important implications for how we treat people who are dying.

“Currently, the medical system is geared toward avoiding death–an avoidance that is often motivated by views of death as terrible and tragic,” the researchers write in their paper. “This focus is understandable given cultural narratives of death’s negativity, but our results suggest that death is more positive than people expect: Meeting the grim reaper may not be as grim as it seems.”

Complete Article HERE!

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How GPs can handle conversations about end-of-life care

Talking to patients about end-of-life care is not easy even for experienced health professionals, says Dr Pete Nightingale, but following simple guidelines can make the process easier.

By Dr Pete Nightingale

[A]s a GP, you are likely to have had many patients in your care with a life-limiting condition, or who are approaching the end of their life. Speaking honestly about death with someone who will soon face it themselves can be daunting, but can also be extremely rewarding.

A new report by Macmillan Cancer Support, No Regrets, explores the taboo around death, and included the worrying revelation that while 76% of people with cancer have thought about their own death, just 8% of these have shared their feelings with a healthcare professional.

This is concerning for a few reasons. I’d hate to think that any of my patients could be suffering in silence, feeling they cannot share their concerns with me.

GPs and their teams have the potential to play a significant role in helping people work through an Advance Care Plan. Macmillan has found that when healthcare professionals have a record of where someone would like to die, they are nearly twice as likely to die in the place of their choosing.

But talking isn’t always easy, so here are some tips:

Starting the conversation

Some people will make it clear that they are ready to start talking about it, but some may be waiting for a professional to bring it up. You could try a gentle prompt, such as, ‘many people at times like this want to discuss the future’.

Listen to the patient rather than talking yourself

People with an incurable diagnosis may value a sense of control so follow their agenda as much as possible in conversations. Some people, when they are nervous, try to cover this up by talking, but all you need to do is show you are listening. Reflecting what  the patient says back to them can be a reassuring way of letting the patient know you are listening.

Think about including a family member in the conversation

Ask if they want someone close to them to be present. It can provide support for the patient and can also help ease communication within families. Some families shy away from discussing Advance Care Planning, so emphasise the importance of letting the patient talk about the future, if that’s what they want.

Focus on personal preferences

Support the patient in talking about what they would like to happen and what a ‘good’ death means to them. This can include anything from pain relief, location, whether they want their family members present, religious or spiritual needs, or more. Be prepared for the conversation to be more wide-ranging than their clinical needs.

Don’t rush

As GPs, we have an increasingly hectic working life. But remember, there is no time-scale for completing an Advance Care Plan. You can carry the conversation into other appointments, or ask other primary care staff to help.  Help could come from members of  the nursing team or trained care administrators and in some areas trained volunteers are involved.

Ask open questions, listen, then record and share (with permission)

If the patient allows it, let their wishes be known to family, key professionals and out-of-hours services, ideally electronically so they’re accessible.

Be honest

It may be tempting to offer false reassurance to comfort the patient. This can be misleading and prevent the person from coming to terms with what is happening. Phrases like ‘don’t worry’ may seem comforting, but they also imply that you are unwilling to answer difficult questions.

It’s ok not to have the answers

You may feel anxious that you won’t be able to answer all their questions, but you don’t have to have all the answers. Be honest, and say ‘I actually don’t know, but let me find out for you’.

Take opportunities when they arise

If you have the chance to complete an Advance Care Plan with someone, or even just start the conversation, take it! Even if they seem well, remember that there may not be more opportunities to have this chat with them, and people can deteriorate quickly. It’s better to have the conversation sooner rather than later.

Complete Article HERE!

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Laid to Rest at Home

How to Plan a Home Memorial Service for Your Departed Loved One

[H]aving a memorial for a loved one after their passing is an important part of the grieving process. It’s a time to honor them, share memories with family and friends, and say goodbye. Some families find that there’s no better place to hold this personal event than at home, but knowing exactly where to start the planning process — especially amid the grief of a loss — can feel overwhelming.

This guide will help you plan a beautiful, meaningful home memorial service for a recently departed loved one. Proceed with patience and plenty of support. With a little time and the right planning, you can hold a service that will allow your family to come together and say goodbye.

Choosing a kind of service: Memorials vs. Funerals

The services and items you’ll need in planning a home memorial will vary depending on the kind of service you’ll have. Your loved one may have left instruction on their final arrangements, but if not there are two main options: memorials and funerals.

Memorial
Memorials usually involve a group of family and friends coming together to mourn the loss of a loved one. There may be photos of the departed, flowers, and at least one eulogy, often from a surviving spouse, parent, or sibling. Some families also choose to have a religious or spiritual figure speak. The loved one is typically represented by a large photo, collection of photos, wreath, or if they’ve been cremated, their urn.

Food and drink are often incorporated into memorials, and can be organized in just about any format that works for you and your loved ones. Some memorials will offer light refreshments like water, coffee, crackers, cheese, and mini sandwiches. In other cases, the memorial is a potluck where family and friends are invited to bring a dish to share. Alcohol isn’t required, but it’s commonly offered — typically a basic wine selection is sufficient. Leftovers stay with the host or are given to the immediate family of the deceased (if the memorial is held at someone else’s home). For large memorials, it might be worth the expense to hire a caterer to provide finger foods, utensils, and drinks.

The location of the memorial within the house is entirely up to you; one convenience of a home memorial is that you can tailor it to be exactly how you want. Some families even choose to have a backyard service if the weather permits. The living room, den, or formal dining room are all good options, but ultimately it will depend on the space available in the house. You’ll need adequate room for your guests to chat amongst themselves before and after the service, seating for the formal eulogy or service, and places for people to set their food and drinks. Finally, there should be some kind of a dedicated space where the speakers will be clearly seen and heard, usually close to the visual representation of the deceased loved one.

Seating doesn’t necessarily have to be anything formal — though you can rent extra chairs if you have the space and finances to do so — and many people manage by bringing all the chairs in the home to the memorial space. Neighbors and other nearby family and friends will likely be able to bring over extra chairs if needed. Arrange them facing the speakers’ area, and do your best to leave clear pathways for guests.

Flowers are somewhat traditional for memorials, but can be quite expensive. A floral wreath with your loved one’s photo is often more than enough to create a beautiful and personal tribute and won’t cost too much, especially if multiple family members pitch in. If you do choose to buy additional floral displays, don’t be afraid to deviate from the normal white arrangements. A home memorial allows you to really personalize the experience, so consider choosing types and colors of flowers that will bring happy memories of your loved one: the peonies your mother carried on her wedding day, tulips the color of your brother’s prized ’67 Mustang, or the roses your grandmother grew in her garden, for example. Keep in mind that though they make a lovely addition to a home memorial, flowers are completely optional — often those that are sent by loved ones with condolences are enough to create the desired effect.

Another option in lieu of flowers is to collect money and donate to a charity that was near and dear to the deceased one’s heart. This donation can be made in the memory of the person who died to honor a cause that was meaningful to them. People often, most of the time actually, like to have those who would buy flowers donate to a nonprofit organization of their choice. This is often in memory of the person who died or even a cause that was near and dear to the deceased one’s life,

Large memorials may require a more advanced sound system. Some families like to play their loved one’s favorite songs (the volume level really depends on the tone of your memorial, but usually you’ll opt for the quiet side) or other calming music to soothe their guests before the service. Having a microphone and speaker set-up will make it easier for your eulogists to be heard, and even better if you have some kind of podium or raised step for them to stand on.

If finances are tight, you’ll likely be able to find a neighbor, family member, or friend who will have access to equipment you can borrow. Don’t be afraid to ask around; your loved ones will be hoping to lend a hand at this difficult time, so let them.

A funeral will require all the same considerations as a memorial, with the addition of handling the viewing. You’ll need to coordinate with a funeral home (to help prepare the body) and cemetery (for the burial) directly after your loved one’s passing; you don’t have to make any final planning decisions right away, but letting them know your situation and potential needs ahead of time can save you some time and stress later. Additionally, you’ll need to consider how much space you’ll need for the casket within your home memorial space.

Traditionally, families have purchased caskets directly from a funeral home or casket showroom, but options have increased in the last couple decades. Shop wisely, but don’t get too caught up in worrying about finding the “perfect” one. Your loved one wouldn’t want you to fret over it, and no one at the memorial will be focused on anything but their grief.

Though there are some individual facilities that handle body embalming and preparation, many families choose to work with a funeral home for these arrangements. You’ll need to provide an outfit for your loved one to be laid to rest in and any specific grooming details (hair styling, lip color, painted nails, etc). The funeral home will also request photos to use as reference so that the departed appears as natural as possible.

You should contact the funeral home soon after the passing of your loved one so as to keep the remains properly preserved. Determine a clear schedule and discuss plans for transportation. Make sure you’ll have the necessary assistance to physically move your loved one to and from your home, and clear a path through the house to make transport easier. Plan to have your loved one arrive half an hour to an hour early; you’ll want everything else to be set up so that you can direct the funeral home workers and troubleshoot any issues quickly.

You’ll also need to talk to the funeral home about what will happen to the remains after the memorial. If they will be buried within a few days of the funeral, the facility may agree to hold the remains until then and help transport them to the cemetery. Planning a burial service with the cemetery (and coordinating with the funeral home) will be a completely separate process, but you should plan on keeping the cemetery informed of all final arrangements. If your loved one opted for cremation, funeral home employees may pick up the remains after the memorial and take them directly to be cremated.

Seeking Additional Help
One of the most important parts of planning a home memorial is asking for help. Again, those close to you will be eager to help out in any way that they can, but often it’s enlisting their assistance in the smallest tasks that makes the biggest difference. If trusted family and friends are offering to provide child care or meals while you plan the memorial, accept it. If neighbors offer to help pick up family from the airport while you meet with the funeral home director, say yes. You’ll be able to focus on your planning and be more effective, and that accomplished feeling will likely help you relax more in your downtime.

Family and friends are extremely helpful when it comes to referrals, so ask around about funeral homes, cremation specialists, caterers, and florists. If you don’t have a necessary item for the memorial — like a podium for the eulogists or an easel for a photo display — ask friends, neighbors, and nearby relatives if they have anything that will suffice. It might be helpful to plan as much as you can, then create a master list of everything you still need and send it to loved ones who may be able to help. Emailing tends to be the preferred method of communication, but for quicker conversations it might be better to opt for a group text with specific loved ones who can pass on the information to others.

Social media is another helpful way to not only reach out to loved ones for help, but also keep everyone informed about the memorial. Creating an event or memorial page on Facebook can be a constant point of reference for friends and family no matter how far away they are. Most families elect a designated loved one to post updates and respond to questions, ideally someone with social media and tech savvy.

It’s important to remember that depending on the situation and the loss, there will be some people you should avoid burdening with favors. The spouse, children, and parents should be asked to do as little as possible outside of voluntary involvement; don’t shut them out of the planning process if they want to contribute, but be willing and prepared to help them make some of the major decisions as needed. If there is some kind of written document (be it a will or other personal document) that details your loved one’s final arrangements and wishes, ask to have access to it while you plan the memorial so you don’t have to constantly ask questions.

The truth is, planning a memorial for someone you love is never easy. Holding the event at home can make the grieving process feel less detached and allow for a much more personal experience. Keep in mind throughout the process that no minor detail, be it the material of the casket or the number of flowers, is worth fretting over. Putting your loved one to rest is about so much more than the physical details, so channel your energy into creating a loving environment for everyone to say goodbye.

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