Simulated end-of-life journey delivers emotional insights

Maine hospice and health care professionals, medical students and even loved ones can broaden empathic responses via virtual reality.

 


 
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Pull the headset over your eyes and the world around you fades. You have become 66-year-old Clay Crowder, and you are dying.

Your doctor looks into your eyes and quietly explains that medical treatments aren’t working. The lung cancer has spread. You have four to six months left.

Later at home, you doze while listening to your wife and two daughters discuss your care with a hospice worker. As death nears and pain intensifies, you see what’s happening inside your body. Your lungs and rib cage begin to heave rapidly. Medication eases your discomfort. Your breathing returns to a slow rattle.

Family members gather around your bed. You hear them talking. Prompted by a hospice nurse, your wife tells you that it’s all right to let go.

“It’s OK, honey,” she says. “You’ve got your girls here.”

A still from Embodied Labs’ virtual-reality simulation of the death of Clay Crowder, a fictional creation, shows the terminally ill man’s two daughters, left, and his interactions with a hospice nurse.

It’s tough being Clay, a new interactive, virtual reality video that lets the participant go through one man’s end-of-life experience. Hospice of Southern Maine and the University of New England are using the computer simulation lab as a learning tool for health care professionals, medical students, hospice workers and patients’ loved ones.

A box of tissues is always nearby.

“It’s powerful,” said Susan Mason, clinical services manager for Hospice of Southern Maine. “I’ve been a hospice nurse for five years and I was truly shocked at how much I hadn’t considered before I went through the experience as Clay. You truly feel like you’re in it.”

David Carey, chaplain for Hospice of Southern Maine in Scarborough, interacts with a virtual-reality video depicting the final moments of a terminally ill man’s life. Users say the simulation by Embodied Labs is powerful.

Clay Crowder, family man and military veteran, is the creation of Embodied Labs, a Los Angeles-based company that has produced several computer sim labs designed to put people in a patient’s body.

The University of New England in Biddeford has been using the company’s virtual reality technology for nearly two years, to help medical students better understand what it’s like to experience health problems as common as hearing loss and as devastating as Alzheimer’s disease.

Now, Hospice of Southern Maine, based in Scarborough, is using the Clay lab to give staff and family members a better sense of what it’s like to die. Even the most experienced hospice caregivers can find themselves reaching for a tissue and learning something new.

Hospice CEO Daryl Cady said she believes the Clay lab has the power to change the way people feel about death and hospice care, especially for younger generations who are familiar with virtual reality technology.

“It’s so important that people understand how hospice can help at the end of life and not fear it,” Cady said. “If they take just 30 minutes to put on the VR goggles and stand in the shoes of someone with a terminal illness, just think of the change that could make.”

POPULATION AGES, DEMAND GROWS

Cady said the Clay lab also gives hospice staff and volunteers an opportunity to witness the conversations that happen when a physician delivers a terminal diagnosis and the family dynamics that often come into play.

Jaye Van Dussen, community liaison for Hospice of Southern Maine, comforts David Carey after he watched a virtual-reality video depicting the final moments of a terminally ill man’s life.

Such education and outreach is expected to become increasingly important as Maine’s population continues to age and demand for hospice care grows.

Maine’s population is now solidly the oldest in the nation, with the highest median age of 44.7 years – meaning the younger population is dwindling – and tied, with Florida and Montana, for the largest proportion of residents age 65 and older – 19 percent of the state’s 1.3 million people, according to the U.S. Census.

Hospice of Southern Maine’s clinical teams – nurses, social workers and others – visit about 200 patients daily, up from about 130 patients daily just three years ago. Last year, the agency cared for a total of 1,641 patients – either at home or at Gosnell Memorial Hospice House in Scarborough – a 2 percent increase over the previous year, according to the nonprofit’s annual report.

Maine’s use of hospice services has grown steadily in the last decade, Cady said. When Hospice of Southern Maine started operating in 2004, about 9 percent of Medicare-eligible Mainers used hospice services, placing the state at 49th in the nation. By 2013, 57 percent of eligible Mainers were accessing hospice care and the state had moved to 25th in the nation, according to Medicare data.

“The Clay lab will help us educate the community about the end-of-life experience,” Cady said.

BASED ON FAMILY EXPERIENCE

Inside the Clay lab, with the virtual reality goggles over your eyes, you experience the transitions that patients and family members must make throughout the dying process.

When the doctor says you have a few months to live, you turn to your left and see the pained look on your wife’s face. To your right, your feisty daughter presses the doctor to explain why surgery is no longer an option. Your family is adamant. They won’t let you just “fade away.”

Later, you wind up in the emergency room after a serious fall. A compassionate nurse explains some of the benefits of hospice care. Mostly it’s about doing what you’re able to do and keeping you comfortable.

“It comes down to how you want to spend the time you have left,” she says.

Embodied Labs was started in 2016 by four young technology entrepreneurs. CEO Carrie Shaw, a medical illustrator and health educator, was just 19 years old when she helped care for her mother, who had early-onset Alzheimer’s.

That experience prompted Shaw to wonder if putting health care providers in their patients’ skin might make them more effective. Her older sister, Erin Washington, designs the company’s curriculum.

First, the company produced a sim lab experience called Alfred James, a 74-year-old African-American man with advanced macular degeneration and high-frequency hearing loss.

Next, they created Beatriz Rogers, a middle-aged Hispanic woman who progresses through the early, middle and late stages of Alzheimer’s. Clay Crowder is their latest.

LINKS TO UNE, MAINE HOSPICE

All three sim labs are required viewing in the geriatrics education program at UNE’s College of Osteopathic Medicine, one of the few med schools in the nation that require significant training in aging-related health issues.

“Students are always amazed at the experience of becoming Alfred or Beatriz or Clay,” said Marilyn Gugliucci, director of UNE’s geriatrics program. “It’s always interesting to see how they respond to Alfred’s frustration that his doctor is treating him as if he has cognitive impairment when he doesn’t. He just can’t see or hear well.”

Embodied Labs, UNE and Hospice of Southern Maine have developed mutually beneficial relationships, Gugliucci said.

The Clay lab was created after a team from Embodied Labs spent 48 hours at Gosnell House, interviewing staff members and witnessing all that they do, similar to the experience that several UNE med students have each year.

More recently, another team from Embodied Labs spent 48 hours in the dementia unit at the Maine Veterans’ Home in Scarborough, where UNE med students go to learn what it’s like to live in a nursing home, Gugliucci said.

The team’s experience will be woven into the next virtual lab, which will feature a Muslim woman who has Parkinson’s disease and Lewy body dementia, the second most common form of dementia after Alzheimer’s disease.

‘WHAT ACTIVE DYING LOOKS LIKE’

The Clay lab is presented in three segments: terminal diagnosis, decision to start hospice care and death.

“You see what active dying looks like, including what actually happens to the body,” Carrie Shaw said. “Our goal was to make something that’s not scary or grotesque, but it is informational.”

The last segment takes place in Clay’s bedroom.

Again, you are Clay.

Your eyes are nearly closed and your vision limited as family members and caregivers come and go. You hear them talk about your cold feet and your blue hands. Your daughter wonders if you need a feeding tube. The hospice nurse quells her concerns about your declining need for food.

Your death is shown symbolically. An imaginary great blue heron that has visited you before, capturing your fading attention to this world, appears again and flies off from the foot of your bed.

You watch the rest from above as your wife and daughters take turns saying goodbye.

The hospice nurse returns to bathe and dress you in your military uniform. She speaks to you in a gentle, now familiar voice, as if you are still alive.

 

“Mr. Crowder, we’re going to take care of your body now, OK?” she asks.

Your experience as Clay Crowder ends as your casket, draped in an American flag, is wheeled out of the house.

Complete Article HERE!

Schools fall short when it comes to helping students in grief

– here’s how they can improve

Many children experience the death of a loved one. How teachers respond matters.

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An adolescent experiences the death of his mother after a lengthy illness.

When I ask what services he would like to receive from the school, he initially says he didn’t expect special treatment, would be embarrassed by counseling from the school mental health staff and wouldn’t feel comfortable if many of his teachers asked to talk to him about his grief.

At the same time, the student felt as though the school should somehow take his situation into account.

“I don’t know what the school should do,” the student told me. “But I just lost the person I love most in my life and they act as if nothing happened.”

In my many years as a developmental-behavioral pediatrician who specializes in school crisis and child bereavement, I believe this dilemma – that is, the need to do enough but not to overwhelm the grieving student or the adults who are trying to help – represents a major challenge for America’s schools.

The need for recognition by trusted adults of their loss, a genuine expression of sympathy and an offer of assistance is often what students seek after a major loss – but too often don’t receive.

A common experience

Loss is very common in childhood – 9 out of 10 children experience the death of a close family member or friend and 1 in 20 children experience the death of a parent.

In contrast, teacher preparation to support grieving students is uncommon. In a recent survey conducted by the American Federation of Teachers and the New York Life Foundation, 93 percent of teachers reported that they never received any training on how to support grieving students. They identified this lack of training as the primary barrier that prevented them from reaching out to grieving students in their class and offering the support they knew they needed. Worried that they would do or say the wrong thing and only make matters worse, some educators chose instead to say and do nothing.

In recognition of this problem, I offer a series of insights and recommendations that teachers can adopt to make the school experience less stressful for students who have recently lost a loved one. Although the advice is aimed at educators, surviving parents or caretakers or anyone who cares about how to help bereaved students can use this advice to advocate on their behalf.

The consequences of inaction

Saying nothing says a lot to grieving children. It communicates that adults are either unaware, uninterested or unwilling to help. It leaves children confused about what has happened and how to react. It leaves children unsupported and forces them to grieve alone. Adults should reach out to grieving children and let them know that they are aware and concerned and are available to provide support and assistance.

What not to say

Anything that starts with “at least” should probably be reconsidered – “at least she’s not in pain anymore” or “at least you still have your father” are generally not helpful comments. It suggests that the adult is uncomfortable with the child’s expression of grief and is trying to “cheer up” the grieving child in order to limit the adult’s own discomfort. Don’t encourage children to hide their feelings or reactions, and don’t feel that you have to hide your own emotions. Be genuine and authentic. Tell grieving children that you are sorry about their loss and ask them what they are feeling and how they are doing.

There isn’t anything you can say that is going to make everything right again for a grieving child. So, listen more than you talk. Other guidelines of what not to say – and what to say instead – to grieving children can be found in “The Grieving Student: A Teacher’s Guide.”

Engage peers

Peers want to – and can – be an important source of support to grieving children, but often are unsure what to say or do. Provide them advice on what to say and practical suggestions on how to be helpful. This will help grieving children obtain critical peer support and decrease their sense of isolation. It will also reduce the likelihood that peers will instead ask repetitive and intrusive questions or tease grieving children.

Offer academic accommodations

Grieving children often experience a temporary decrease in learning ability. They may be tired from not being able to sleep, have difficulty concentrating and learning new material, or may be experiencing significant disruptions in their home environment that make it difficult to study or complete homework.

Grieving children should view school as a place of comfort and support, especially at a time of loss. If they are worried about failing, school becomes instead a source of additional distress. Teachers should offer educational support before children demonstrate academic failure. Check in more frequently to make sure that they are learning new material and are able to keep up with the workload.

Talk to other teachers, instructors and coaches and try to help grieving students balance all of their responsibilities. If the student needs to prepare for an important concert, then maybe academic teachers can lessen some of their assignments. Grieving students may need to have their workload decreased or modified temporarily. If a major report seems overwhelming, substitute with shorter and more manageable assignments. If it’s hard for them to stay on task to complete an individual project, consider a group project that might promote peer support.

Be more sensitive

Teachers can also introduce activities with more sensitivity. For example, if you are going to do a project for Mother’s Day, introduce the activity by telling students that you realize some children may not have a mother who is alive or living with them. They can still complete the activity remembering their mother, or can choose to focus on another important female family member. This will also help students whose mothers may be deployed in the military or incarcerated, or away for other reasons.

Help children manage grief triggers

Many things may remind grieving children about the person who died and cause them to temporarily feel a resurgence of their grief. It may be a comment made by a teacher or a peer, such as “I went shopping with my mother this weekend,” or a portion of a classroom lesson, such as a health education lesson that references a similar cause of death.

Holidays such as Thanksgiving or the winter holidays tend to involve spending time with loved ones and may accentuate the sense of loss. Let students know that these triggers may occur and set up a safety plan. Students may be given permission to step out of the classroom briefly if they are feeling upset and worried that they will not be able to contain their emotions. Work out a signal to communicate when this occurs that doesn’t draw attention to the student. Make a plan for where the student will go and who they can talk with. If students know that they will be able to leave, they often feel less overwhelmed and will be more likely to remain in class and stay engaged in the lesson.

For more information

The Coalition to Support Grieving Students offers free learning modules on a wide range of issues related to grieving students, including videos and written summaries. Schools can also learn more about how to help grieving students through the Grief-Sensitive Schools Initiative.

Complete Article HERE!

My sons’ grief at a friend’s death has forced me to see I can’t shelter them forever

One thing never ceases to strike fear into the heart of parents: the idea of our kids dying before us

The idea that someone could be in your life one day and gone the next was incomprehensible to Jo Davies’ sons.

By Jo Davies

I was at the grocery store the other night when my younger sons and I ran into my next-door neighbour toting his six-week-old son.

After cooing over Junior’s beautiful blue eyes and his adorable expressions for a bit, one of my boys asked to touch the little one’s cheek. My neighbor hesitated for a moment and then declined, saying the baby hadn’t yet had his second round of vaccinations.

I was shocked for a moment, then smiled, reminding myself we were dealing with that most nervous of Nellies: the first-time parent.

Whether you have kids or not, you’ve likely heard the stereotype of the hyper-responsible first-time mom or dad jumping to boil the baby’s pacifier the second it touches the floor or rushing to the ER for every uptick in temperature.

Undoubtedly, this initial hyper-vigilance serves a purpose: it’s Mother Nature’s way of ensuring the survival of the species. All parents go through it, and most get over it.

There’s one thing, however, that never ceases to strike fear into the heart of parents: the idea of our kids dying before us.

A few weeks ago, my sons’ classmate died at the age of 15.

He was a nice boy — quiet and respectful and kind. His death was unexpected, shocking and a heartbreaking introduction into the ways of grief not only for my two sons, but their school community as well.

At this point in their young lives, my sons haven’t experienced the death of anyone close to them except for their grandparents. That was obviously upsetting for them, but their father and I were able to help them to rationalize it, because their grandparents were much older than them; they’d lived a good life and left a legacy for which their many friends and family would remember them fondly.

When their friend died, however, it was virtually impossible to come to terms with it.

Despite the best efforts of their teachers and school counsellors, my boys were at a loss. The idea that someone could be in your life one day and gone the next was incomprehensible to them.

I asked myself: knowing what I know about death (my father died suddenly when I was 24), how can I make the death of their friend make sense to them? I came to the conclusion that I can’t.

There is no way to make sense of such a tragic circumstance, to find a silver lining. All I can do is try to help them cope with what’s happened.

To that end, I’ve done my best to read up on teenage grief, so I can be useful to my sons.

I’ve learned that, as with adults, teenage grief is as unique as each individual who experiences it. It can’t be dictated or forced to fit someone else’s conception of what’s appropriate.

I’ve also realized that for teenagers, grieving is just one more complication in an already turbulent period of life. The death of a close friend can cause them to question their own, newly formed identities as young adults; to ask questions they might never have considered before about life and mortality.

What’s been hardest for me in this process is watching my sons come to the realization that life, at its core, is uncertain. There are no guarantees of happy, long lives for the ones you love, even if you wish there were.

Up until now, their teenage brains (with their still-developing sense of consequences) have helped to make them feel invincible, or if not invincible, at least unconcerned with thoughts of dying — which seemed to me to be as it should be. Kids should be able to live their lives without constantly thinking about death and dying.

 

Now they know words like “hearse” and “pallbearer” and “condolences.” They have witnessed the depths of a parent’s grief as they listened to their friend’s mother describe all the ways she will miss him.

They’ve also been surprised by kindness from unexpected quarters; friends they didn’t know cared who gave them a hug or a tissue.

They have learned a lot of things over the past few weeks, as have I.

Mainly, I’ve learned that there was still a part of me that thought I could keep them safe from the harsh realities of life. I can’t, and that hurts.

However, just as I taught all three of my sons to use a spoon, to tie their shoelaces and to say “please” and “thank you,” I can teach them other things that are even more useful.

I can teach them to value each day they have on this earth, to be grateful that they knew their friend, and to be happy they were good friends to him during his short time here.

I’m pretty sure those are lessons worth learning.

Complete Article HERE!

Disney Movies Can Help Kids Understand the Concept of Death

So says a new study.

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Whether it was Bambi’s mother, Mufasa, or Syndrome, everyone remembers that one Disney death that really made an impact. Likely, it was your first encounter with a character meeting an untimely demise. Well, according to a new study from the University of Buffalo, Disney films can actually play a huge part in helping kids understand and accept death.

Why Disney movies specifically? Well, first and foremost, Disney (and Pixar) movies feature a lot of death. In fact, according to Business Insider, researchers Kelly Tenzek and Bonnie Nickels analyzed 57 Disney and Pixar films and found that, overall, there were a total of 71 character deaths. Researchers also noted that characters in kid’s movies are twice as likely to die than characters in movies aimed for adults.

In addition to all the death, the study, which was published in OMEGA Death and Dying, confirmed that the movies also feature themes that allow kids to handle death in a way that they would otherwise not be able. The movies use intentional patterns to teach kids lessons about life and death via “the character’s status in the film, the cause of death, whether the death was presented or implied, and also whether they were the good or the bad guy.”

An example of one of these themes in action is the fact that in several Disney movies, the main villain falls to their death instead of actually being killed by the protagonist. Think of Gaston in Beauty and the Beast or Captain Hook in Peter Pan. Why is this significant? According to the study, this frees the hero from responsibility and makes the death feel more justified in the eyes of young kids.

Disney movies also benefit from the fact that they are primarily animated. This allows kids to engage with the concept of death without it feeling too real. A child can know that a character such as Mufasa has died but also know that the character is ultimately fictional, which in turn allows them to grasp the concept of death without being overwhelmed.

So next time you’re watching The Lion King for the 100th time with your kid and you’re totally Timon and Pumbaa’d out, appreciate that, in addition to lodging the rhyme of “thin-skinned” and “downwind” in your head for the rest of the day, it  may just help your kid come to understand mortality a bit more.

Complete Article HERE!

Doctor seeks to ease fear, anxiety and discomfort surrounding impending death

Dr. Bob Uslander with a patient

By Joe Tash

Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”

To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.

A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.

His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.

While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.

“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”

Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.

“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.

In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.

Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.

Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.

“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”

The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.

Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.

The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.

Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”

Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.

Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.

“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.

For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.

Complete Article HERE!

Looking after a dying loved one at home?

Here’s what you need to know.

Caring can be very rewarding for both the carer and the patient.

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When someone dies at home, everyone in the family is affected. Looking after a relative who is at the end of their life can be enormously rewarding, but carers have many unmet information and support needs. This can take a toll on their physical and emotional health.

Here are some tips if you are looking after someone nearing the end of their life.

1. Look after yourself

Carers looking after someone with a life-threatening illness have higher levels of emotional distress, including depression and anxiety, than the general population. It’s important you look after yourself.

Self-care might mean finding time to take a break from caring by signing up for yoga classes where calming breathing techniques are practised, or seeking counselling or support groups.

Caring can be very rewarding for both the carer and the patient. Research shows caring can make people feel closer to those they’re caring for. Carers often feel proud that they have been able to look after someone in their last years, months or days of life.

It can be a positive experience to think about the rewards of caring, like spending more time together or knowing you’re making a difference to a loved one at a difficult time.

It’s important you look after yourself.

2. Get informed

Caring for a relative at the end of life is likely a new experience. Many carers are learning on the job and often don’t feel practically or emotionally prepared for the task. Research consistently shows carers want to know how to safely carry out practical caring tasks, like moving the person in and out of bed, preparing suitable meals, and giving medication.

Emotional tasks might include listening to the patient’s worries and helping the patient write down their preferences for care and treatments in an advance care plan. When patients have an advance care plan, carers report less stress because key decisions have already been made and documented.

Palliative care services often have support groups or information sessions, which help carers feel more prepared and better informed. Such groups help meet carers’ information needs. They also increase self-efficacy (the belief of being able to personally succeed in caring tasks).

Recently, distance learning has been offered to carers and evidence shows this helps them feel more prepared to carry out their duties.

A carer’s emotional tasks might include listening to the patient’s worries.

3. Ask for help

Many current approaches to supporting people nearing the end of life involve working with whole communities. Known as compassionate communities, these approaches are based on the concept it is not just up to an individual carer, or the health service, to look after people approaching the end of life. Support can be everyone’s responsibility, from pharmacists, librarians and teachers to employers and colleagues.

Apps, such as Care For Me, and websites can help co-ordinate help from friends, family and the community. The website Gather My Crew offers a way for carers to list tasks they need help with, to take some of the pressure off themselves.

4. Talk about it

When someone is critically ill or dying, family members often decide not to share their worries with each other. Psychologists call this protective buffering. People do it to try to protect their family and friends from worrying more.

Although it is well-intended, protective buffering can make people feel less close. It’s OK to share worries with each other. Being able to talk about feelings means being able to deal together with the difficult things like pain or fear.

Talk about your anxieties.

Using the “d” words (death and dying) can be difficult, and is an outright taboo in many cultures. Find language that suits you: be direct (death), or use metaphors (pass away) or less direct phrases (getting sicker) so that you can talk about worries together.

5. It’s OK to think about the future

It’s hard to balance feeling positive and feeling sad about the person approaching the end of their life. Many family members and carers say they feel guilty for thinking about the future or making plans for after the person has died.

But research in bereavement has shown it’s normal and healthy to move between focusing on the here and now, and on the life after the caring role ends. This might be reassuring if you’re the kind of person who doesn’t always want to face emotions head on – distracting yourself by thinking about the future is actually a natural and healthy thing to do.

Complete Article HERE!

We Deserve More Than a ‘Good Death’

The case for demanding end-of-life care that meets our needs

By Amy Berman

If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.

Let me tell you a story to show you what I mean.

At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.

Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.

The Proactivity of Palliative Care

Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.

The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.

Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.

The World Health Organization even recognizes palliative care as “fundamental to improving the quality of life, well-being, comfort and human dignity for individuals” and has called for it to be integrated as an essential element of the serious illness care we receive.

When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.

And that’s the point. We deserve to live out our lives on our own terms.

What Matters to You?

The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.

Improving care for people living with serious illness requires palliative care and — when needed — hospice services.

People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.

Complete Article HERE!