Website that helps you plan for death finds success with millennials

By Rebecca Ruiz

Liz Eddy has lost track of how many times she’s told the story that led her to co-found Lantern, a website that helps people tackle the complex logistics of losing someone they love and also plan for their own deaths.

That story starts with a phone call on a Saturday morning from a nursing home with news that Eddy’s grandmother had died. Two police officers and a nurse greeted Eddy in the room where her grandmother’s body lay.

“They looked at me and said, ‘What do you want to do?'” recalls Eddy, who was 27 at the time. “I had no idea what to turn to … and really was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

“I was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

Eddy, who lost her father as a child, anticipated this moment. Her grandmother, who was frail, had done some pre-planning. She’d written a will, completed an advanced directive for her medical care, and told Eddy where she kept important paperwork and belongings.

But Eddy quickly learned that there’d been oversights, including how she might close certain accounts, stop auto-refill prescriptions, and find online passwords. Eddy figured she’d rely on a comprehensive online resource that could walk her through what to do but found none. Instead, she embarked on a “scavenger hunt of websites” for answers.

“I fully expected to find something like Lantern,” she says.

In the midst of coping with her grief and trying to settle her grandmother’s affairs, Eddy walked in the door of her best friend Alyssa Ruderman’s home, and said, “We’ve got to do something about death.”

The pair launched Lantern last fall with $890,000 in pre-seed funding. The website offers free checklists for users who need to plan a funeral, help dealing with logistics that follow a funeral, or assistance sorting out their last wishes in advance of their own death. The site has thousands of users, and to Eddy’s surprise, 40 percent of them are 35 and younger.

Lantern’s appeal to millennials speaks to a number of trends. They may help older parents plan for what happens when they die and then decide to make similar arrangements for themselves. Accustomed to having everything in their lives optimized or organized by a digital tool, the 35-and-under crowd may view online end-of-life planning as a helpful service like any other they use.

In general, talking about dying seems less taboo to many millennials. They encounter the “positive death” movement online, which aims to make conversations about death normal and routine. But millennials also live in a world that seems beset by crisis, whether that’s mass shootings, climate change, or coronavirus. Contemplating what the end looks like is part of being alive.

Anita Hannig, an associate professor of anthropology at Brandeis University who studies death and dying, says people — not just millennials — increasingly want to express their unique selves in death as in life.

The challenge is getting people comfortable enough to consider what that looks like. Eddy and Ruderman have designed Lantern to sound like a compassionate friend who knowingly takes your hand. The site isn’t morbid but instead offers practical information about the choices we can make before we die, like hiring a death doula and how to write a will. Users can compare different burial options, learn how to select life insurance, and explore how they want to be remembered online.

“A lot of people still think that if you’re talking about death too much, there’s an eerie way you’re bringing it about,” Hannig says. “In some ways, having a website like this [is] making death so much more manageable so that you can focus on the actual process of death and dying when it happens.”

Viana McFarland, a 25-year-old New Yorker, discovered Lantern after an employer-sponsored financial planning workshop prompted her to think about what might happen to her belongings and modest savings after she died. After searching Reddit and Google for resources, she found Lantern.

“There were small things I didn’t think about,” McFarland says.

That included the specifics of her burial. McFarland learned that she could let her body decompose in a “mushroom suit,” which hastens the breakdown of a corpse using mushroom spores and other microorganisms. She explored how to donate organs and leave money to the ACLU and Planned Parenthood. Most of all, McFarland wanted to spare her loved ones stress, confusion, and conflict. The time she spent on Lantern felt useful and productive.

“I guess younger people, with more resources at our hands, might become informed sooner or in a different way than our parents and grandparents were,” says McFarland.

More than three dozen articles on Lantern offer advice and insight on common questions. Its checklist offers a step-by-step guide to managing your last wishes. Tasks include making a funeral financial plan, safely storing financial information so it can be accessed by a loved one, and writing a last will and testament.

Lantern is also sentimental. The checklist prompts users to reflect on their legacy, asking about the three best decisions they ever made, what advice they’d give to their younger selves, and what they’d want their grandchildren to know about them.

“These questions were really developed because we started to realize that people don’t ask these questions of their loved ones, and it’s often the thing you think about when they’re gone,” says Eddy, who personally longs to know stories from her father’s life.

While it’s crucial to record the practical and sentimental information, Lantern must also deliver on keeping it secure. The site uses encryption and currently doesn’t collect information it doesn’t feel equipped to protect, such as passwords, wills, and Social Security numbers.

Instead, its business model is based on referring users to services that specialize in certain products, and which Eddy and Ruderman have personally vetted. For estate planning, Lantern recommends Legal Zoom. To help loved ones close online accounts, it suggests the password manager 1Password. Lantern can receive a referral fee when its customers sign up for such services. Eddy and Ruderman are also exploring pitching Lantern to organizations, like life insurance companies and hospitals, whose clients need the information the site has to offer. They’re making the same case to human resources departments who could use Lantern as a benefit for employees who, like McFarland, don’t know how to start end-of-life planning.

Though Lantern will probably offer a premium subscription to users in the future, Eddy and Ruderman are adamant that its basic how-to content and checklists will never be paywalled.

“We don’t think people should not have access to this information because they do not have means,” says Eddy. 

The company can take that stand because it’s a public benefit corporation, which means it plans to pursue a mission-driven approach while also seeking a return for investors. 

“Our vision is to be the central resource that any one person uses to navigate their life before and after a death.”

Nancy Lublin, an entrepreneur who is the founder and CEO of Crisis Text Line and the former CEO of DoSomething.org, made an angel investment in Lantern. Lublin knows Eddy and Ruderman from their previous roles at Crisis Text Line and DoSomething.org, respectively.

She said in an email that Lantern is poised to serve a “huge untapped market. Millennials, in particular, are bound to find Lantern appealing.

“How the heck are people going to deal when their parents and grandparents (fyi: enormous boomer generations) pass away?” wrote Lublin, noting that millennials use digital tools to find everything from roommates to lovers to marijuana. Of course they’d want something similar to help them manage death.

Eddy and Ruderman are aiming to become the first thing anyone turns to when it’s time to grieve a loved one or plan for the end of their own life.

“Our vision is — and always will be — to be the central resource that any one person uses to navigate their life before and after a death,” says Ruderman. “That is our North Star.

Eddy is buoyed by the possibility that she’s helping others avoid what she experienced following her grandmother’s death: “You don’t have to be forced to pick the first thing you see on Google,” she says.

Complete Article HERE!

Planning for death during a pandemic

By Dr. Ramy Salah

As a palliative care doctor, it is my job to sit with patients and imagine death, the distant reality that we would rather ignore. After warning a heavy conversation is forthcoming, I ask, “Have you thought about how you would want your care to look like if time were short?” The responses to questions about end-of-life care are as varied as they are familiar. “Keep me comfortable.” “I don’t want to be a burden to my children.” “If I can’t recognize my wife, let me go Doc.” Through statements like these, I learn which treatments are most appropriate for my patients on a personal level. It is my goal, after all, to make sure the care that my patients receive matches the care that they would want.

Palliative care focuses on quality of life for patients dealing with serious illness. Therefore, these conversations have become second nature to me. As precise as a surgeon is with her scalpel, I tactfully employ a combination of words and silence to explore my patients’ thoughts about transitions from health to illness, from home to hospital, from life to death. I temper my approach delicately over several visits — as the maxim reads, “Death, like the sun, cannot be looked at steadily.” This is possible with conditions such as cancer or dementia, where life expectancy can be months or even years. During the time of COVID-19, however, we may not have that sort of time.

In the last month, we have been inundated with medical information — I, for one, have tried to decipher more graphs than I would have cared to in a lifetime. From presidential press conferences to cable news to twitter feeds, we eagerly listen for the evidence to make sense of the pandemic. What are the latest numbers of cases and deaths? Which experimental treatments among the antimalarials, antivirals, antibiotics and antibodies seem promising? What are the ethical considerations on rationing ventilators in a national shortage? I am elated that medical professionals have become the loudest voices in the media, however there hasn’t been encouragement for discussions like the ones I have with my patients.

Advance care planning, or better read as “planning for your care in advance,” is generally thought of as a good idea. Though 82% of people say that documenting their wishes regarding end-of-life care is important, only 27% have completed advance directives. My patients are also reluctant to talk about death, but I have seen how much harder it is to have these discussions when they’re critically ill. I say, “In a health crisis you have to process your emotions before making medical decisions. Or you can make those decisions now before things get too emotional.” Studies show that the latter makes for a much smoother process for the patient, their loved ones and their care teams.

So, where do you start? There are three steps in advance care planning:

1). Reflection: Ask yourself — What makes life worth living? What quality of life would be unacceptable for me? There is no shortage of resources to help begin the process, including PREPARE, Go Wish, and The Conversation Project.

2). Conversation: This is the hardest step in the process, and the most crucial. This exercise is useless if you do not share your values and beliefs with those who will be involved in your care if you get sick. This includes your loved ones and your doctors.

3). Documentation: I urge readers to become familiar with two documents: 1). The Advance Directive (AD); and 2). The Physician Orders for Life-Sustaining Treatment (POLST) form. The AD names a durable power of attorney who will make decisions on your behalf if you are unable. It will also direct those involved in your care how to treat you if time were short. The pink POLST form mainly addresses resuscitation — if you were found pulseless, would you want medical personnel to carry out CPR or allow a natural death? I argue that everyone should have an AD, regardless of age or health status. Everyone with a serious medical condition, especially if they reside in a nursing home, should complete a POLST with their doctor.

In the age of coronavirus, I’m sure you, like me, have vacillated between hope and fear. Maybe you shrugged it off as unfounded mass hysteria one day and envisioned doomsday scenarios the next. Regardless, you must translate your energy into positive action. As grateful as I am to you for staying home, practicing good hand hygiene and donating protective equipment to hospitals, I urge you to begin the tough conversations and advance care planning with your loved ones. After all, it’s always too early until it’s too late.

Complete Article HERE!

Anticipatory Grief Is Real,

And It’s Okay to Feel it During the Coronavirus Crisis

By

I keep having nightmares about going to Target. In these dreams, I walk through the aisles of one of my favorite places, enjoying a Saturday shop. Suddenly, as people brush by me or stand close in line, I realize my grave mistake: I’ve ventured out into a pandemic, and I’m surrounded by potentially infected people. Panic sets in. Anger at myself for somehow forgetting this new reality. Then I wake up feeling sad. I know I can’t go to Target, and I miss it. Once I can go back, will I be afraid, like in my dreams?

This is one of many minor things I mourn about our new way of life. As COVID-19 sickens thousands across the country and the world, the future we’ve all depended on is no longer a foregone conclusion, and it’s really, really sad.

Harvard Business Review named grief as the “discomfort” so many of us are experiencing, and that’s exactly true. I’ve cried for days on end, thinking about the things I thought I’d be doing. Worse, I cry when I imagine people in the near future I had neatly mapped out getting snatched away by an unrelenting illness. I grieve for those who are sick and dying, but I also grieve for my loss of autonomy, trips I’ve canceled, lost hours in the sun, and for the ideas I had about my future life that seem less tangible by the day.

I know I’m not alone. College and high school graduations won’t happen this year, leaving young people who are looking forward to a new chapter of their lives floundering. Many will miss out on prom, a pivotal coming-of-age moment for some. The going-away parties, weddings, birthdays — they’re all canceled.

Right now it seems trivial to mourn the absence of your college graduation ceremony or a school dance because of the coronavirus pandemic, particularly as dead bodies overwhelm hospital morgues. It is kind of trivial. And it’s true that it’s better to miss a milestone if it means saving lives.

But as our lives are torn apart, rendered unrecognizable by social isolation and coronavirus cancellations, it’s only human to mourn the life you thought you’d have.

“Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday,” David Kessler, grief expert and author, told Harvard Business Review. “Anticipatory grief is also more broadly imagined futures. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety. We are grieving on a micro and a macro level.”

It can also feel confusing because grieving a lost shopping trip, or even something bigger like a graduation, feels selfish. How can I feel bad for myself when I still have my life and, so far, my health? Ashley Ertel, LCSW, BCD with Talkspace, says ranking grief isn’t helpful.

“You may even be feeling guilty for being sad about missing out when other people are facing sickness and death,” she tells Teen Vogue. “I hope to encourage you by saying that grief comes in all shapes and sizes, and it is normal to feel all sorts of emotions when your reality does not match up with your expectations. Each of our emotional experiences is valid. We don’t compare our levels of joy, and we need to stay away from comparing our feelings of sadness. Sad is sad.”

Sad is, in fact, sad. Of course, no one would compare the grief of missing prom to that of losing a loved one, or even having and recovering from COVID-19. Everyone knows it’s not the same. Still, we feel sad, especially when the celebrations and rituals that “provide special meaning [in] our lives” are taken away, as Ertel puts it. Rather than push our feelings of grief and sadness away, Ertel recommends we allow ourselves to feel it. Acknowledge and honor your feelings, she says; then try to live in the current moment.

In this moment, I feel sad that I can’t go to my favorite restaurant on Fridays like I normally do. I feel sad that I might have to cancel my bachelorette party. I feel sad that this was supposed to be a happy, busy time in my life and it’s now marked by death and daily feelings of despair.

I also feel sad that people are sick. I worry about myself, my friends, and my family. I feel sad that people are dying, and I feel sad for their families. I feel sad that, when this is all over, we won’t know what’s normal and won’t feel familiar with the world around us. I feel sad that, more than ever, I don’t know what the future holds.

But I also feel excited for the dinner I’ll eat tonight. I feel thankful for my comfortable couch and my two adorable cats. I feel like I should brush my teeth. I feel grateful I have food in my fridge and a secure place to weather this storm. I also occasionally feel thankful for this big slowdown, for the canceled plans and postponed events. The mundane joys and discomforts of life are still here, amid all of this. Now, more than ever, I am reminded that there are things to be hopeful for, like the future trips to Target I know I’ll take. And I have hope that they will be happy, like they were before.

Until then, I think I’ll be sad — and that’s okay.

Complete Article HERE!

We can’t be squeamish about death. We need to confront our worst fears

Patients, their families and their doctors need to be open about the inevitable as the virus sweeps through our population

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As the coronavirus spreads through the population, there is one fact we can all agree on. Whether we like it or not, society’s greatest taboo – death and dying – has been thrust unequivocally centre stage.

How could it not, when government strategy is to allow the virus to infect huge swathes of the country in the hope of building sufficient “herd immunity” to protect from future harm? The virus has killed an estimated 3.4% of those it has infected, according to the World Health Organization, although this figure is expected to decline as the true number of people infected becomes apparent. Herd immunity, according to Downing Street’s chief scientific adviser, requires a minimum infection rate of 60% of the population. Thus we may face a potential early and unexpected death toll of hundreds of thousands of Britons.

There is, therefore, a glaring imperative to confront the topic so many of us long to squirm away from: the inescapable fact of mortality. As a palliative care doctor, I am intimately acquainted with our reluctance to square up to dying, and with the unintended harms of such squeamishness. Advance care planning – the phrase doctors use to describe proactively how much medical intervention you would wish for in extremis – is too frequently neglected, by patients and doctors alike.

Sometimes, for example, if an oncologist is less than candid about a patient’s frailty precluding any further rounds of chemotherapy, a family may be unaware that time is running out. Profound and vital conversations between family members never happen. Final messages hang in the air, forever unsaid.

Suddenly, the patient is comatose and fading. And no one has sought to find out if they would like heroic efforts at prolonging life – or if, perhaps, their final wish is to die at home, neither gowned nor tubed, with no machines and only loved ones at their side.

We are fast approaching a crunch time. NHS intensive care beds will be imminently overwhelmed with patients in dire need of mechanical ventilation. Italy’s experience has shown all too graphically that peak infection rates demand draconian rationing of health resources. In Lombardy, for example, some beleaguered hospitals have been forced to impose bans on ventilators for coronavirus sufferers aged over 60 – this despite knowing that it is predominantly the elderly who will die.

As Britain approaches peak infection, we therefore owe it to each other to start talking now. Would your mother, approaching 80, even wish for an intensive care bed? Do you, her anxious offspring, even feel able to find out? No one can pretend these discussions are easy. Our dearly beloved mums and dads are no less loved for their years; how on earth do we begin to broach the prospect of each other’s deaths?

If there is one thing I have learned from my time in a hospice, it is that these conversations rarely measure up to the degree with which we dread them. Indeed, for some elderly patients – conscious of their frailty – a little candour about the future can bring immense relief. It is fine to stumble, feel awkward, grope your way, get the words out wrong. In the end, all that matters is motive: the sincerity of your fumbled aim to tease out your loved one’s views.

Two medical truths may help you find the strength to talk and listen. First, every medical intervention has cons as well as pros. Even for young and healthy patients, intensive care is a gruelling experience that can leave serious, long-term medical problems. For the elderly, survival is more doubtful, let alone full restoration to good health.

Second, not every problem can be fixed. Sometimes, a disease is so aggressive that intensive care cannot cure, but only harm. When doctors conclude intensive care is not an option, it is not discrimination but a weighing-up of what might work, the sober balancing of benefits and risks.

In the end, an advance care plan need be nothing more technical than a chat over a cuppa. Steel yourself. Find out your loved ones’ wishes and tell them yours at the same time. There is kindness in being informed and prepared.

And – please – know that however besieged the health service becomes, we will never stop caring for every patient. You may be young, you may be old, but we will always do our best. How much you matter to us will never, ever run dry.

Complete Article HERE!

Study suggests overtreatment in end-of-life care despite POLST

Patients with treatment-limiting Physician Orders for Life-Sustaining Treatment (POLST) are less likely to be admitted to the intensive care unit (ICU) but may not always receive treatment that is consistent with their wishes, according to a study published online Feb. 16 in the Journal of the American Medical Association to coincide with the Society of Critical Care Medicine annual Critical Care Congress, held from Feb. 16 to 19 in Orlando, Florida.

Robert Y. Lee, M.D., from the Cambia Palliative Care Center of Excellence at the University of Washington in Seattle, and colleagues investigated the association between POLST orders for and ICU admission for patients receiving end-of-life care. The included patients with who had POLSTs, died between 2010 and 2017, and were hospitalized within the last six months of life.

The researchers found that of 1,818 decedents, 401 (22 percent) had POLST orders requesting comfort measures only, 761 (42 percent) requested limited additional interventions, and 656 (36 percent) requested full treatment. Patients with comfort-only and limited intervention orders were less likely to be admitted to the ICU; however, 38 percent of patients with comfort-only and limited intervention orders received POLST-discordant care. Patients with cancer were less likely to receive POLST-discordant care, while patients admitted for traumatic injury were more likely to receive POLST-discordant care.

“Lee et al have provided important new information about the relationship between POLSTs and overtreatment of patients at the end of life,” write the authors of an accompanying editorial. “These insights will assist clinicians in developing strategies to help ensure that hospitalized near the end of life receive only those treatments that are both desired and beneficial.”

Complete Article HERE!

Providing emotional support to people at the end of life and their families

How can social workers address difficulties in communication and help promote openness between professionals, service users, their family and other carers?

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All social workers may occasionally need to become involved in end-of-life care, even when most of their work lies in other fields. This may arise, for example, when a service user or a member of a service user’s family has a sudden fatal accident or commits suicide, or becomes aware that they or a close relative or friend is dying.

Practitioners may sometimes worry about being pitched into end-of-life care unexpectedly because it disrupts existing plans and may lead people to express powerful emotions. As a result, the situation or emotions may seem frighteningly out of control; indeed, this is one of the fears that many people have at the end of life.

Social workers can play a key role in responding to service users’ and carers’ feelings of uncertainty and lack  of control. We can also address difficulties in communication and help promote openness between professionals, service users, their family and other carers.

Communication is key

A common issue in the dying process is the extent to which service users and family members and friends are aware that they are dying; awareness develops through communication. Death and dying are often hidden in our society and are medicalised, separating them from everyday life.

Many people regard openly discussing someone’s death with them as inappropriate. This attitude may be characteristic of some people in older age groups and is also associated with the cultural expectations of some minority ethnic groups.

To help people and families with the end of life, practitioners need to be able to talk with them, and most people working in end-of-life care aim for openness. However, even if the person accepts that they are dying, some prefer not to talk about it, and their approach must be respected.

A useful approach to openness is to start from the service user’s or carer’s perspective. You can ask: “Can you bring me up to date on what you have been told by…(the doctor, nurse)?” It may also be useful to get a picture of their own assessment of their illness, and ask: “Have you noticed any changes in your condition?” Later in a serious illness, you could ask how they assess changes: “Would you say you are weaker today than last week?” To get a picture of how realistic their view is, you can ask: “What has happened that makes you think that?”

Being informed of a short prognosis often leads to a change in mood. Depression arises from focusing on the potential and actual losses, and anxiety arises from seeing the prognosis as a threat to plans for the future and relationships. Crisis theory (Golan, 1978) suggests that it may help if you can stimulate a sense of challenge, helping people to think through what they want to do with the short time they have left, reordering priorities. If you identify depression or anxiety, you could also refer the service user for medication to manage symptoms.

Completing ambitions and tasks

Although someone may know they are facing death soon, the end-of-life phase is often characterised by uncertainty: people do not know what is going to happen to them, or the timescale. Some people maintain hope by denial, but this may be unhelpful for them if they have tasks to complete, for example, writing a will or making care arrangements for their children after death. All hope contains a rational element, in which people look at the realities of their position, and an emotional element, in which they express aspirations or expectations.

People may wish to complete ambitions, such as swimming with dolphins, or taking a last holiday. They may wish to visit previous homes or favourite places. You can suggest possibilities to them if they have not thought of any.

Social workers can support the following aspects of emotional and psychological care:

  • managing the practical and emotional consequences of increasing frailty, a progressive condition or a life-threatening illness;
  • enabling dying people, their carers, families and communities to express and deal with emotional responses to the ‘bad news’ of a short prognosis and subsequent bereavement;
  • helping people look forward to opportunities remaining to them in their life, and helping them to live their life within their family and within a community;
  • helping people complete social and relationship ‘tasks’ (see box) and making other preparations for death;
  • spiritual care (sometimes provided by a minister of religion or chaplain).

Resolving interpersonal issues

Many people wish to complete interpersonal and social tasks in the time available to them, to bring significant interpersonal attachments to a satisfactory end. These are often about resolving four important interpersonal issues:

  • Saying goodbye to important people.
  • Saying “thank you” for care provided and “for putting up with me”.
  • Saying “I love you”, even if there has been a degree of estrangement.
  • Saying sorry for some real or imagined failing, or “I forgive you” for something that has gone wrong in a relationship.

In some cases, people may have become estranged from friends or relatives who are important to them, and it can be useful to ask: “Is there anyone who you would like to know about…(your illness, admission to hospital or care home)?” and to help to approach divorced or separated parents of children who may wish or at least be willing to see the service user for a last goodbye.

Supporting family and carers

Family members and informal caregivers make a significant and irreplaceable contribution to meeting the needs of dying people. Many dying people become increasingly dependent on family, friends and other caregivers for practical and emotional help. This is particularly an emotional labour for caregivers, as round-the-clock care interacts with their own feelings of loss and other priorities in their lives.

Social workers can help by arranging practical supportive services for carers as well as offering emotional and psychological support. This might include adult day care, respite care, home care, and education and social opportunities to improve satisfaction, quality of life, and reduce the feeling of burden. Sustaining families has the secondary gain of also helping the patient.

Preparing fully for someone dying is not possible, but you may be able to help people think through how they want to let go of the relationship, particularly if there have been difficulties with it. You could talk to them about what has been important in the relationship, how they will best remember the service user and the possibility of rituals of leave-taking.

A final cuddle or sexual act may be important. If a visit to the pub is not possible, a favourite beer together may be a substitute.  Information that may help people’s preparation includes: what happens to their body after death, negotiating legal requirements or what sort of funeral they want. Discussing these issues allows negotiation about individual and family preferences to take place. For others, focusing on what to do after someone has died feels inappropriate and contributes to feelings of guilt.

During the dying phase, the social worker’s role is to facilitate family members and carers to participate as they want. People often wish to be present throughout the last few hours, and hospitals and care homes usually call known relatives to the bedside; at home, carers and family members may need to be reminded to do this.

The dying person may disclose unknown relatives and friends, for example, extramarital relationships or estranged family members, and it is often a social work role to make contact. If the dying person and family agree, social workers may negotiate for them to have final contact with these relatives and friends.

It is also useful for social workers to think through their approach to providing bereavement care where a service user they are involved with is coming towards the end of life. The full guide considers different psychological and sociological models and approaches, and when they may be appropriate to use.

Complete Article HERE!

Working in Hospice Changed My Perspective on Death

“Like many physicians, I’d never considered that there might be more to death than an enemy to be fought.”

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Tom was only forty when he arrived at Hospice Buffalo with end-stage AIDS. Unlike most of my patients, he was not surrounded by loved ones. Not a soul came to visit, ever. He was rather stoic, so I wondered if the absence of visitors was his choice rather than an indicator of his loneliness. Maybe that was his way of refusing to give death an audience.

I was puzzled but, wanting to respect his privacy, did not inquire. Tom’s emaciated body showed traces of once-chiseled muscles. He had kept fit and was still quite young, which gave me hope. In light of his age and physical conditioning, I thought that his body would be more likely to respond positively to life-prolonging treatment. Not long after he was admitted, I went to the nurse’s station and decreed, “I think we can buy Tom some time. IV antibiotics and fluids should do it.”

The charge nurse, Nancy, had been at Hospice Buffalo for much longer than I had. She knew her job, and everyone looked up to her. She was also not one to mince words. Still, her response took me by surprise: “Too late. He’s dying.”

I said, “Oh really?”

She replied, “Yep. He’s been dreaming about his dead mother.” I chuckled awkwardly—equal parts disbelief and defensiveness. “I don’t remember that class from medical school,” I said.

Nancy did not miss a beat. “Son, you must have missed a lot of classes.”

I was a thirty-year-old cardiology fellow finishing my specialty training while working weekends at Hospice Buffalo to pay the bills. Nancy was an exceptional veteran nurse who had limited patience for young, idealistic doctors. She did what she always did when someone was out of their depth—she rolled her eyes.

I went about my business, mentally running through all the ways modern medicine could give Tom another few weeks or even months. He was riddled with infection, so we administered antibiotics. Because he was also severely dehydrated, I asked for a saline drip. I did all I could do as a doctor to prolong his life, but within forty-eight hours, Tom was dead.

Nancy had been right in her estimation of where he was on the downward slope. But how could she have known? Was it just pessimism, the numbing effect of having watched so many people die? Was she truly using a patient’s dream as a predictor of life-span? Nancy had worked in hospice for more than two decades. She was tuned in to aspects of dying I knew nothing about: its subjective dimensions. How patients experienced illness, particularly dying, had mostly been ignored throughout my training as a doctor.

Like many physicians, I’d never considered that there might be more to death than an enemy to be fought. I knew about blind intervention—doing everything possible to keep people conscious and breathing—but had little regard for the way any given individual might wish to die, or for the unavoidable truth that ultimately death is inevitable. Because it had not been part of my medical education, I failed to see how the subjective experience of dying could be relevant to my role as a doctor.

It was ultimately the remarkable incidence of pre-death dreams and visions among my dying patients that made me realize how significant a phenomenon this was, both at a clinical and a human level. As a hospice doctor, I have been at the bedsides of thousands of patients who, in the face of death, speak of love, meaning, and grace. They reveal that there is often hope beyond cure as they transition from a focus on treatment to notions of personal meaning. As illness advances, grace and grit collide and bring new insight to those dying and their loved ones, insight that is often paradoxically life-affirming. This experience includes pre-death dreams and visions that are manifestations of this time of integration and coming into oneself. These are powerful and stirring experiences that occur in the last days or hours of life and that constitute moments of genuine insight and vivid re-centering for patients. They often mark a clear transition from distress to acceptance, a sense of tranquility and wholeness for the dying. Patients consistently describe them as “more real than real,” and they are each as unique as the individual having them.

These end-of-life experiences are centered on personal histories, self-understanding, concrete relationships, and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond. They are about a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members, or seemingly insignificant details such as the texture or color of a loved one’s dress, the feel of a horse’s velvety muzzle, or the rustling sound of a cottonwood’s shimmering leaves in the backyard of a childhood home. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved.

Doctors owe it to their patients to incorporate this awareness into our practice. End-of-life experiences ought to be recognized as evidence of the life-affirming and inspiring resilience of the human spirit that drives them. They are proof of humanity’s built-in, natural, and profoundly spiritual capacity for self-sustenance and self-healing, grace and hope. They help restore meaning at end of life and assist in reclaiming dying as a process in which patients have a say. They also benefit those left behind, the bereaved, who get relief from seeing their loved ones die with a sense of peace and closure.

This subjective experience of dying is also a powerful reminder that beauty and love in human existence often manifest themselves when we least expect it. The patients who summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and hunger for air. Catheters, IVs, and pills may now be part of their every day, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological, and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also have pre-death dreams and visions in the context of which they display remarkable awareness and mental sharpness.

Herein truly lies the paradox of dying: patients are often emotionally and spiritually alive, even enlightened, despite a precipitous physical deterioration. The physical and psychological toll of dying may be undeniable, but it is also what makes the emotional and spiritual changes brought about by end-of-life experiences border on the miraculous. Doing justice to end-of-life experiences means accounting for this paradox, one in which death and dying transcend physical decline and sadness to include spiritual awakening, beauty, and grace. Or, as the title character in the acclaimed Tuesdays with Morrie puts it, “Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die.” This is also true of the dying process, which often functions as a summing up, culmination, and capstone, an opportunity to recognize and celebrate our humanity in all its complexity and dignity rather than just as an ending.

Excerpted from DEATH IS BUT A DREAM by Christopher Kerr, MD, PhD and Carine Mardorossian, PhD. Published on February 11, 2020 by Avery, and imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2020 by William Hudson, LLC

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