Tag: End of Life Care

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This Startup Wants to Make End-of-Life Care Easier and More Compassionate

 

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[M]aggie Norris endured two significant family deaths just six years apart. First, her stepfather was diagnosed with bladder cancer, which spread to his lungs and his brain. He passed away in 2008. Then, her biological father was diagnosed with lung cancer, which metastasized to his spine. He died in 2014.

Caring for her biological father and her stepfather before their deaths meant that she, her sister and her mother had to put their lives on hold. Caring for them meant everything from bathing and administering medications to planning meals and overseeing care, all of which she said amounted to a full-time job. While her stepfather was more forthcoming about his illness, her father was not as open about his, which led to Norris and her sister not finding out about his prognosis until things had gotten difficult.

In between all of this, Norris said her family conducted research in order to understand the illnesses. It was not clear how these conditions would progress or what they should do to ensure the best care was provided.

“He didn’t openly talk about it with family or his primary oncologist, so by the time we found out he was really in a tough spot,” Norris said, referring to her biological father. “What people don’t understand is death is a process. It doesn’t happen in a day or a week. It is over the course of several months or several years. It’s an emotionally and situationally really complex to navigate.”

An idea emerged in the aftermath of her grief. What if there was a way to making end-of-life planning easier? How can discussing advanced care be simplified in a way that keeps family members, medical professionals and other stakeholders in the loop? Those questions led her to create After, an end-of-life planning software that provides informational healthcare videos, organizes key legal and healthcare-related forms, and coordinates end-of-life care requests with stakeholders involved in patients’ healthcare decisions. Norris founded the company in January 2017 and is preparing for a soft launch this August.

The software features animated videos that walk patients through what to expect with their diagnosis for the most common causes of death including cancer, heart disease, Alzheimer’s, chronic lower respiratory disease, diabetes and stroke. It also allows patients to organize their advance care planning and power of attorney information. But what distinguishes the software, Norris said, is its personalized, compassionate questions regarding how the patient wants to spend their last length of time.

“No one likes talking about death and dying, even if it’s your job to have conversations with patients about death and dying,” Norris said. “A lot of times physicians wait for families and patients to come to them with questions. The problem with that is the first stage of grief is denial.”

Norris is in the process of determining where to best place her software. It’s a natural fit for the healthcare industry, but she said she could also see the software being applied by lawyers and financial planners, or pharmacist. Navigating bureaucratic hospital systems and healthcare laws could also be tough for the company going forward, she added.

Still, Norris is aiming to provide vulnerable patients with a way to regain control over their final moments and initiate the uncomfortable, yet necessary conversations surrounding death.

“How do you make this conversation happen more often and easier and more accessible?” Norris said. “There’s this empty space there, and we’re trying to fill it with software.”

Complete Article HERE!

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Navigating the end of the road

Death doulas offer education, support to those seeking alternative options while dying or grieving

A screenshot of a video documenting a home funeral shows family members visiting their deceased loved on in a home setting. The video was produced by Lee Emmert and the University of Oregon’s School of Journalism and Communications Department.

By Courtney Vaughn

[W]hen both of her parents died six weeks apart, Nancy Ward had to confront death in a profound way.

She was lucky, sort of. Her parents had prearranged for their care after their deaths, but Ward recalls being uneasy with the post-mortem process when her father died of congestive heart failure.

“Up until this point, I had never seen a dead body because I was about as death-phobic as they come,” Ward says. “A man came into the room, he looked about 14, and unrolled a black plastic body bag on the gurney. I’m going, ‘Oh my God. This man was just living and breathing and now you’re gonna put him in a black plastic bag and do what?’ Put him out on the curb for waste management to pick up?”

Ward succinctly recalls the emotional sterility of the situation.

Nancy Ward

“This doesn’t feel right, this doesn’t feel good, it doesn’t feel loving, or respectful,” she thought to herself. “He doesn’t know my father. I know my father.”

Six weeks later, her mother died.

“I knew what was coming and didn’t like it, but I had nothing to replace it with,” Ward says.

Afterward, she became a death midwife, or “death doula” as some call it, availing herself to others so they didn’t have to go through the same process she did with her parents.

Ward is now used to confronting death. In fact, she and others have made a living out of it.

A few years ago, Ward and other colleagues in the death directives industry teamed up to form the End of Life Care Collaborative. Members help educate and guide people in their quest for home funerals and other self-directed death practices.

The group focuses on serving those who are dealing with the death of a loved one, or preparing for their own death.

Services range from home funeral preparation and arrangements, to help with navigating the traditional funeral process, to emotional and practical support for those delving into the end of their own lives, and a gamut of other services to serve those confronting death.

The ultimate goal, members say, is to help people achieve greater meaning, or a more comfortable process around dealing with death and accepting loss. To get there, clients must be willing to shake off some of the cultural stigma of death.

“As a society, we aren’t comfortable with dealing with death because it reminds us of our own mortality,” Ward says. “We think everybody should know what their options are and right now, they don’t. We’re trying to reach the people who want it done differently but don’t know what different looks like.”

Ward and the collaborative team help educate people on what their options are for preserving a loved one at home after they’ve died, or bringing the body of a loved one home if they choose.

Ward says most members of the collaborative try to operate on a sliding-scale fee system, to make sure no one is turned away because of finances.

“We all have different areas we like to focus on and that’s what makes the collaborative so important,” she says. “We can do everything from the totally esoteric to the toally practical.”

That means being a listener and helpful guide, or doing a load of laundry or providing a meal for a grieving household.

She points to a recent client she worked with- a woman dying of cancer- who wanted to be prepared when her final moments came, but more importantly, wanted to rely less on her family for her physical and emotional needs.

“She said, ‘my family is having a really hard time with this …I don’t want to burden them with my own questions and expressions, this is what I need you for,'” Ward recalls.

“Their psychological and emotional needs are unmet,” Ward says of many terminally ill patients. “My involvement is just simply working with the person on a psychological, spiritual, emotional level.”

Members of the collaborative are not isolated in their quest to provide resources and support for death directives, but their services aren’t widely available, or even widely culturally accepted.

Asher Wallis

“I have seen a good deal of anxiety arise from family members who are trying, in the midst of disorienting grief, to figure out what their loved ones, who had not planned logistically or financially for the events that would follow their death, would have wanted,'” Asher Wallis, an End of Life Care Collaborative member and grief counselor, explains.

He attributes some of the sources of that unnecessary stress to “culturally sanctioned misinformation about the physiological and psychological nature of dying such that both the family caregivers and the dying person think they are doing it wrong.”

Deborah Threadgill, a collaborative member who is also a certified funeral director, says the End of Life Care Collaborative focuses on making “everything family-directed,” meaning they never suggest or push services on clients. Rather, they try to educate them on their full range of options surrounding death and dying.

“We take something that is very, very traumatic in our society and taboo and make it something natural and beautiful,” she says.

Complete Article HERE!

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I’m terrified of dying — and, apparently, so are you

Every Sunday Mindy Gillenwater volunteers for hospice care at the Robison Residence. Over the course of four years she as served as a companion to many patients like Kevin Sweat.

by Richard C. Gross

[W]hen I once conveyed concern to my father about his eventual death, his matter-of-fact response was, “We all die.”

And he did. At 89, of complications of pneumonia. Some say it was the best way to greet the hereafter: He went to sleep, into a coma, helped by doctor-administered doses of morphine. Yet when the ambulance initially came for him at the assisted living facility, his light brown eyes widened with fear.

I’m deathly afraid of dying. The idea of no more Richard weighs on me the older I get, and I’m getting up there. There’s so much more to do, so many more people to meet, so much to see, so much to live for, so much more to know. But there is no cure for aging.


 
I learned my fear of dying is not irrational; I have lots of company.

“Death is still a fearful, frightening happening, and the fear of death is a universal fear even if we think we have mastered it on many levels,” wrote Swiss-American psychiatrist Elisabeth Kübler-Ross in her seminal 1969 book, “On Death and Dying.”

Cultural anthropologist Ernest Becker, in his Pulitzer Prize-winning 1973 book, “The Denial of Death,” writes that “anxiety about death is a constant fact of life for everyone and that it is the underlying cause of the many other fears and phobias people experience.” Fears of being alone or stuck in a confined space, for example, are substitutes for fear of death.

Maybe singer Neil Diamond, now 76, expressed those very fears in the lyrics of his 1971 song about loneliness, “I Am … I Said:”

“But I got an emptiness deep inside/And I’ve tried/But it won’t let me go/And I’m not a man who likes to swear/But I never cared/For the sound of being alone.”

Alone or not, one’s mortality and the inevitability of death becomes more real the older we get, especially as relatives, friends and onetime coworkers — people with whom we’ve spent many years — die, shrinking our world, reminding us with a jolt that one day we will join them. Attending funerals becomes commonplace.

Seeking others for opinions about the fear of death, I attended a 90-minute seminar, called “Santa Fe Doorways,” hosted by Denys Cope, a registered nurse for nearly 50 years, including about 30 of them in hospice care. About 30 elderly people attended, all but three of them women; we sat in a wide circle in a windowless room in a retirement home.

Ms. Cope said, “We are all hard-wired to fear death,” and threw out a question: “When you think about death, what matters to you most?”

“To be able to die resting in God’s mercy,” replied one woman, acknowledging she is Christian.

Deep faith in one’s religion must be potently comforting, providing virtually certain assurance of peace as death approaches, perhaps, as another woman said, because of an abiding belief in an afterlife. Enviable. And for the secular among us?

One white-haired man, who experienced a near-death episode, approached the subject lightheartedly, maybe because he appeared so organized. He said he since has written his own obituary, letters to his loved ones and has paid for his cremation. This is a man who will meet his maker head-on.

Another woman took an amazingly positive approach toward death, reveling in its opposite: life.

“What I love about death is thinking how I’m going to live,” she responded to Ms. Cope’s question.

I’m not as sanguine and stubbornly turned back to Becker’s “Denial of Death” to reinforce my feelings about dying. For me, he hit a bull’s eye:

“This is the terror: to have emerged from nothing, to have a name, consciousness of self, deep inner feelings, and excruciating inner yearning for life and self-expression — and with all this yet to die. It seems like a hoax.”

Ms. Cope has another way of looking at death.

“When first faced with the fact they are dying, many people experience a tremendous amount of fear,” she wrote in her 2008 book, “Dying: A Natural Passage.” “Often, I am told, it is not death but the process of dying that is frightening. … As long as we remain attached to this world and to our life, it is a struggle to die. … When we surrender to the process of dying, there is an incredible inward flow of peace and grace.”

I hope I can surrender.

Complete Article HERE!

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Helping Hands Offer Support at the End of Life

A growing network of ‘death doulas’ is gaining popularity while caring for patients and their families.

By Mary Kane

[E]lena Wertheimer still remembers the panic she felt last year after her terminally ill father, Vincent Battista, was released from the hospital to spend his last days at his Wyckoff, N.J., home. She didn’t know how to prepare. She wasn’t sure how to care for him—or herself. “It’s hard to think straight,” she says. “You’re under extreme stress.”

On the advice of friends, Wertheimer sought help from an end-of-life doula, a new type of caregiver for dying patients and their families. Also known as death doulas, they offer support through all the stages of dying, similar to the roles that birth doulas play during pregnancy and delivery. Doulas discuss a dying person’s wishes and concerns, and they create memory books for the family. They organize vigils and coach relatives on the signs of dying. Some run errands, organize paperwork or even plan home funerals.

Wertheimer, 49, was very close to her father, and her doula, Janie Rakow, helped her overcome her fear of watching him die. Rakow encouraged her to sit with him and hold his hand. Rakow gently guided her to his bedside after he passed, and Wertheimer and other family members spent four hours there, crying, laughing and telling stories. Rakow ensured they weren’t interrupted. “It was very, very special,” Wertheimer says. “I saw him finally not suffering. My last vision of him was peaceful. It made all the difference in the world.”

Doulas are gaining in popularity amid a growing effort to improve the end-of-life experience for patients and families, particularly when someone dies at home. Doulas cover “a huge gap” in time and resources that busy hospices can’t always provide, Rakow says. A hospice team advises families on medical care for the dying; doulas guide the dying and their loved ones through the end-of-life process, offering mostly emotional and other nonmedical support.

Finding a Doula

If you’re thinking of using a doula, you may find the search confusing. There are death midwives, mourning doulas, death coaches and more. Some are volunteers; others charge hourly rates of $25 to $100 or offer “Vigil Packages” costing $1,000 and up. There is no regulatory oversight or standard licensing, training or certification. “It’s still kind of the Wild West out there,” says Patti Urban, a doula in Guilford, Conn.

Insurance typically doesn’t cover costs for a doula. Before hiring one, check whether your local hospital or hospice has a volunteer doula program. But be sure the doula can provide all the hours you want.

The International End of Life Doula Association (www.inelda.org) is compiling an online state-by-state directory of doulas it has trained. The nonprofit has provided the training for hospitals and hospices in California, Indiana, New Jersey and New York, and it will train aspiring doulas in 12 cities this year, says Rakow, the association’s president. Doulas will also work with you in hospices, hospitals, assisted-living facilities and nursing homes.

Decide what you want from a doula. Do you need someone to organize end-of-life documents? Or to provide a 24-hour presence at the bedside? Set up a consultation, advises Merilynne Rush, co-founder of the Lifespan Doula Association, in Ann Arbor, Mich. Be sure your doula’s personality is a good fit. You might prefer a take-charge attitude or a soothing presence.

Most doulas charge an hourly rate. Start out with a few hours before making a larger commitment, Rush says. Ask for a contract spelling out services and fees.

Review a doula’s qualifications and training, including criminal background checks and previous experience. Some attend weekend seminars, while others serve a minimum number of vigil hours and pass exams to become certified.

Other groups that train doulas include MourningDoula.com and the Lifespan Doula Association, which details standards of practice at www.lifespandoulas.com. Doulagivers.com offers a free webinar to learn the basics of caring for a dying loved one.

Complete Article HERE!

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The Symptoms of Dying

By SARA MANNING PESKIN, M.D.

[Y]ou and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect.

The Death Rattle

“The graves are full of ruined bones, of speechless death-rattles” (Pablo Neruda)

We suspected the patient wouldn’t survive off the ventilator. A blood clot had crawled up one of the vessels in the back of his brain, blocking blood flow to the area that controlled alertness. He would die from not being awake enough to cough.

The beat of the death rattle began when the breathing tube was removed and continued until life was done. It was a gurgling, crackling sound, like blowing air through a straw at the bottom of a cup of water. The average time between the onset of death rattles to death itself is 16 hours. For him, it was six.

The death rattle is a symptom of swallowing dysfunction. Normally, our tongue rises to the top of the mouth and propels saliva, liquid or food backward. The epiglottis, a flap in the throat, flops forward to protect the swallowed substance from entering the airway.

In the dying process, the symphony of swallowing becomes a cacophony of weak and mistimed movements. Sometimes the tongue propels saliva backward before the epiglottis has time to cover the airway. Other times, the tongue fails to push at all and saliva trickles down the airway to the lungs in a steady stream. The death rattle is the lungs’ attempt to breathe through a layer of saliva.

Despite the sound’s alarming roughness, it’s unlikely that the death rattle is painful. The presence of a death rattle doesn’t correlate with signs of respiratory distress.

As often happens in medicine, we treat based on intuition. To lessen the volume of the death rattle, we give medications that decrease saliva production. Sometimes, we are successful in silencing the rattle. More of the time, we placate our instinctive concern for a noise that probably sounds worse than it feels. Without hurting our patients, we treat the witnesses who will go on living.

Air Hunger

“You villain touch! What are you doing? My breath is tight in its throat” (Walt Whitman)

The patient was a wiry woman in her 80s who had smoked for seven decades. Cigarettes turned her lungs from a spongelike texture to billowing plastic bags that collapsed on themselves when she exhaled. It was like trying to scrunch all the air out of a shopping bag. Air got trapped.

Air hunger — the uncomfortable feeling of breathing difficulty — is one of the most common end-of-life symptoms that doctors work to ease.

The treatment? Opiates, usually morphine.

People sometimes ask why the treatment for painful breathing is a medication that can depress breathing. You’d guess that opiates would worsen air hunger.

The answer hinges on defining why air hunger is uncomfortable in the first place.

Some researchers think the discomfort of air hunger is from the mismatch between the breathing our brain wants and our lungs’ ability to inflate and deflate. Opiates provide relief because they tune our brain’s appetite for air to what our body can provide. They take the “hunger” out of “air hunger.”

Others believe that the amount of morphine needed to relieve air hunger may have little effect on our ability to breathe. Since air hunger and pain activate similar parts of the brain, opiates may simply work by muting the brain’s pain signals.

The patient traded her cigarettes for a breathing mask when she came to the hospital. She quit smoking for the umpteenth time and made plans to go home and live independently again. A few days later, her thin frame tired. She died in hospice.

Terminal Agitation

“Do not go gentle into that good night” (Dylan Thomas)

My grandfather screamed two days before he died. “Open that door and let me out! Right now! It’s a travesty! Open that door!”

It was the scream of a lost child. My grandfather’s eyebrows, which had been lost over the years from the outside inward so that only a centimeter of long gray hairs near the middle remained, tilted toward each other.

Until then, we were preparing for missing and absence. Not for an agitated delirium. Not for rage.

A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens.

Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented.

There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual.

People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.

Complete Article HERE!

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End-of-life care: when CPR is wrong

Pursuing treatment a person has declined represents questionable ethical practice

CPR is the appropriate response when someone has a cardiac arrest, but it has no role in the patient who slips away naturally at the end of a long illness.

[T]he modern intensive care unit offers a wide range of life support mechanisms so that even the sickest person with multi-organ failure can be kept alive. Parallel to this, the media, and television in particular, has removed any veil of secrecy that may have existed about emergency and intensive care medicine. But it may also have raised expectations to an unreasonable level, with evidence to show that the public perception of the role of cardiopulmonary resuscitation (CPR) is not a realistic one.

The inappropriate use of CPR in certain end-of-life situations has been highlighted recently in medical literature. CPR is the appropriate response when someone has a cardiac arrest. However it has no role in the patient who slips away naturally at the end of a long illness. Senior clinicians have expressed concern that doctors who are called at the time of death feel they have no authority to withhold CPR, or they fear the legal risks of doing so – even where CPR is clearly pointless. As a result, patients with terminal cancer or end stage dementia are being vigorously resuscitated rather than allowed to die naturally.

However, this newspaper has uncovered another questionable aspect of end-of-life care. Responding to recent column, readers have described how patients who had clearly and formally indicated they did not wish to be resuscitated were in fact given CPR. In most cases, the treatment failed, but relatives are being traumatised – firstly by having their concerns pushed aside and then seeing their loved one’s body bruised and broken as a result of vigorous CPR.

In some cases this is happening despite having properly drawn-up advanced care directives present in the patient’s chart. In addition, many charts have DNACPR (do not attempt CPR) stickers prominently displayed on their front covers.

Whatever about the legality of ignoring a patient’s wishes in this way, pursuing treatment the person has declined represents questionable ethical professional practice. Healthcare regulators must take steps to address this breach of trust as a matter of urgency.

Complete Article HERE!

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Many faith leaders are unprepared to help people make peace with death

Rabbi Laura Geller addresses a room of participants at Temple Emanuel’s conference, “The Next Stage: Looking Backwards and Ahead,” on November 9, 2014.

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[C]onfronting sickness and death is part of a faith leader’s job description. Members of the clergy sit with congregants during chemotherapy treatments and pray with them in the midst of pain.

Pastors prepare for this work at seminary, spending a semester working as a hospital chaplain or volunteering at a nursing home. However, some still enter professional ministry unprepared to sit at someone’s bedside and offer advice, according to recent research on religion and end-of-life care.

Many faith leaders are uncertain of when aggressive treatments should be traded for hospice care and confused about what palliative treatments consist of, reports a study in the April issue of the Journal of Palliative Medicine.

Seven in 10 clergy members say it is “somewhat” or “quite a bit” important for them to encourage ongoing treatment for a cancer patient, even when a doctor says there is no hope for a cure, notes a new study in the Journal of Pain and Symptom Management.

This research, as well as other findings from The National Clergy Project on End-of-Life Care, points to a need for ongoing education, according to health experts.

“Poor knowledge of end-of-life care may lead clergy to passively enable congregants with serious illness to pursue … treatments that are associated with increased suffering,” wrote researchers in the Journal of Palliative Medicine.

The National Clergy Project is part of Harvard University’s Initiative on Health, Religion and Spirituality. Program leaders are working on a free end-of-life care curriculum to empower faith leaders, highlighting the important role religion often plays at the end of people’s lives.

“What clergy say — and what they do not say — can make a major difference in whether believers experience a ‘good death,'” the Association of Religion Data Archives reported in its overview of recent research.

Increasingly, palliative care, which focuses on providing pain relief rather than a cure, is seen as a key part of dying well, yet many people, including pastors, find it difficult to give up on intense or invasive treatments.

Accepting that a cure isn’t possible “may be perceived as a decision that undermines one’s faith in a God who may intervene with a miracle through medical treatment,” wrote researchers in the Journal of Pain and Symptom Management.

These researchers and other experts at The National Clergy Project on End-of-Life Care don’t want to undermine religious beliefs. But they do want to ensure that faith leaders are informed about medical options before they influence a patient’s decisions.

“Our goal is for patients and families facing difficult medical decisions to receive better spiritual and medical care,” the project website notes.

Around 3 in 4 faith leaders are open to training on end-of-life care, recent research showed.

In addition to seeking out insights from medical professionals, members of the clergy may benefit from organizing conversations about death and dying within their communities. Rabbi Laura Geller, rabbi emeritus at Temple Emanuel of Beverly Hills, has done this as part of a broader effort to understand what people at her synagogue fear as they near retirement.

“The conversations were so rich and powerful that nobody wanted them to end,” she told the Deseret News last year.

Initial small-group discussions on life after retirement grew into a communitywide effort to better serve the needs of older synagogue members. People thought through how to emotionally and spiritually grow even as their bodies aged and illnesses loomed, Rabbi Geller said.

“How do you make meaning in the face of the fact that you’re going to die? That’s what faith communities are supposed to be teaching people,” she said.

Complete Article HERE!