08/21/17

Ashes to Ashes, Dust to … Interactive Biodegradable Funerary Urns?

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The Bios Urn mixes cremains with soil and seedlings. It automatically waters and cares for the memorial sapling, sending updates to a smartphone app.

By Glenn McDonald

Earlier this summer, a modest little startup in Barcelona, Spain, unveiled its newest product — a biodegradable, Internet-connected funeral urn that turns the ashes of departed loved ones into an indoor tree. Just mix the cremains with soil and seedlings, and the digital-age urn will automatically water and care for your memorial sapling, sending constant updates to an app on your smartphone.

At first glance, the concept seems gimmicky — evidently, we’re running out of ideas for smart appliances. But the Bios Incube system can also be seen as the latest example of a gradual transformation in modern culture.

Technology is fundamentally changing how we deal with death and its attendant issues of funerals, memorials and human remains. Much of this change is for the good. Some developments are a little spooky. But one thing is for sure: You can do a lot of cool things with ashes these days.

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The Bios Incube system, which went on sale in June after a successful crowdfunding campaign, is the latest iteration of a much older idea in which ashes are essentially used as compost for a memorial tree or plant. But the Incube system adds some high-tech twists. The biodegradable urn is placed within a 5-gallon planter with an elegant, off-white, minimalist design vibe — call it the iUrn.

Roger Moliné, co-founder of Bios Urn, says the company offers two versions of its system. One provides the basic biodegradable urn and planter at $145. The more expensive version — if you want all the high-tech bells, whistles, atmosphere sensors and smartphone apps — tops out at $695.

“Interestingly enough, we have found so far that most have opted voluntarily for the high-tech option,” Moliné says.

He has a theory on that.

“Most of us are connected to the digital world, and we have become used to it,” he says. “Perhaps by tying together this process with technology, there can be a sense of comfort that comes from using a familiar process with a new experience. We hope that it will push people in a new direction and perhaps make this process easier for those experiencing loss.”

The Bios Urn is part of a high-tech system in which the ashes of a departed loved one are used to help grow a tree.

The Bios Urn concept is indeed part of a larger transformation in which technology is changing how we think about death and dying, says Candi Cann, author of the book Virtual Afterlives: Grieving the Dead in the Twenty-first Century.

“Their approach implies a different sort of afterlife than the religious one — an afterlife that theoretically we can partake in,” says Cann, who teaches religion and world culture at Baylor University.

“Recent theories on mourning reveal that having continued bonds with the deceased allow us to navigate everyday life while renegotiating our relationships with loved ones who are no longer present,” she says. “So in this way, the Bios Urn might actually foster a healthy type of mourning that allows us to look after the dead in an active, daily way.”

Caring for the dead via a smartphone app may seem strange, Cann says, but it makes perfect sense for those of us living in a perpetually connected world: “The generation today has grown up with online spaces and smartphones, so this is their medium.”

Cann has done extensive research on modern mourning rituals around the planet, and the various ways that technology is impacting how we deal with death and dying. The Internet has certainly changed the way we do things. Obituaries are posted online, funeral arrangements are sent by email or text, and social media platforms like Facebook now offer a range of memorial pages and legacy contact options.

In general, this is all good healthy progress, Cann says. “Smartphones and social media spaces have forced a decline in the importance of a controlled obituary narrative, as more people can contribute to the communal memory of a person and the meaning of their life,” she says.

A recurring theme in Cann’s work concerns an odd and abiding reticence in mainstream Western attitudes toward death: In short, we just don’t like to talk about it. Our aversion leads to a lot of unhealthy sublimation in the culture. “I would argue that the reason we see so much death in the media and in video games is precisely because we are not having real conversations about death,” Cann says.

Technology is helping in that arena, too. Cann points to online communities like Death Cafe, which use Internet forums to arrange local meetups for people wanting to talk about death.

Then there is the issue of what to do with the remains. We humans have been navigating this dilemma since the dawn of civilization, but recent technological advances have opened up some options. You can have ashes incorporated into jewelry, blended into oil paintings, mixed into tattoo ink, submerged into coral reefs or even pressed into vinyl records. And don’t forget about the festive fireworks option.

While developing the Bios Urn system, Moliné explored how other cultures are processing cremains, like Tokyo’s unique Ruriden columbarium, which utilizes LED Buddha statues and digital smart cards.

The Ruriden columbarium houses futuristic alters with glass Buddha statues that correspond to drawers storing the ashes of the deceased.

“I’ve seen some interesting things in China and Japan,” he says. “Both have run of out burial space in larger cities and have created interesting ways of commemorating those who have passed.”

Cann says that these new modern rituals, facilitated by various technologies, can help us get a little friendlier with death.

“In Brazil, I went to a public crematorium that cremates a body every 15 minutes, and is an actively used public park and picnic space,” he says. “Families were playing and picnicking among the ashes. If we see deathscapes as friendly places, rather than where the dead are banished, we might be able to utilize them in healthier and more creative ways.”

Looking to the future, however, Cann addresses more worrisome technologies.

“One of the areas I’m thinking more about is the use of artificial intelligence and digital avatars,” Cann said. “These are people intending to upload themselves, via AI, into digital avatars.”

Proponents of this idea contend that uploading the mind into a computer is entirely plausible. But science fiction has some cautionary tales in this area — any technology that promises to defy death is usually nothing but trouble. Ask Dr. Frankenstein. Even speculating on this sci-fi scenario can get a bit dodgy, Cann says.

“Whenever people focus more on extending life rather than examining its quality, death loses its importance,” Cann says. “If we are spending more time trying to deny death or prolong dying, then I think we are not living well.”

In this light, the Bios Urn seems like a fairly gentle step forward. Technology can’t yet provide us with digital immortality, but it can help us grow a memorial tree in our living room. What’s not to like?

Complete Article HERE!

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08/20/17

Death anxiety: The fear that drives us?

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Death is often a taboo subject, so when death anxiety comes into play, it is hard to know how to face it.

Death is something that we all, sooner or later, have to face. But how do we respond to it? Why are some of us more afraid than others? And what is it, exactly, that scares us about death? We offer an overview of theories related to death anxiety, and what you can do to address it.

To a greater or lesser extent, it is likely that we are all scared of death – whether it be the thought of our own cessation or the fear that someone we love might pass away. The thought of death is not a pleasant one, and many of us avoid such morbid musings, naturally choosing to focus on what life has to offer, as well as on our own wishes and goals, instead.

Yet, as Benjamin Franklin once famously wrote, “In this world nothing can be said to be certain, except death and taxes,” so it is no surprise that death-related worries sometimes take us by storm.

Fear of death is sometimes referred to as “thanatophobia,” deriving from the Ancient Greek words “Thanatos,” the name of the god of death, and “phobos,” meaning “fear.”

Notably, thanatophobia – which is called “death anxiety” in a clinical context – is not listed as a disorder in its own right in the Diagnostic and Statistical Manual of Mental Disorders. Still, this rarely spoken-about anxiety has the potential to seriously affect people’s lifestyles and emotional health.

Thanatophobia: Natural or trauma-driven?

Thanatophobia was first tackled by Sigmund Freud, who did not consider it to be fear of death, as such. Freud thought that we cannot truly believe in death as a real occurrence, so any death-related fears must stem from unaddressed childhood trauma.

But it was the theory put forth a little later by an anthropologist called Ernst Becker that ended up informing most current understandings of death anxiety and its causes. Becker believed that death anxiety comes naturally to all people who find the thought of death and dying unacceptable.

That is why, he argued, everything everyone does – the goals we set, our passions and hobbies, and the activities we engage in – is, in essence, a coping strategy, and that these are things we focus on so we that need not worry about our eventual death.

Becker’s work gave rise to “terror management theory” (TMT), which posits that humans must constantly deal with an internal conflict: the basic desire to live against the certainty of death. TMT emphasizes individuals’ self-consciousness and their drive to achieve personal goals, motivated by the awareness of mortality.

Also, according to TMT, self-esteem is key for the degree to which individuals experience death anxiety. People with high self-esteem are better at managing fear of death, while people with low self-esteem are more easily intimidated by death-related situations.

Some newer approaches suggest a “middle way” between TMT and another theory referred to as “separation theory,” which highlights the importance of early trauma, reinforced by an awareness of mortality later in life.

Another recent approach to understanding and explaining death anxiety is that of “post-traumatic growth theory” (PTG). According to PTG, going through a distressing event – such as the death of a loved one or receiving a worrying health diagnosis – can actually have a positive effect, causing individuals to appreciate the small things in life a lot more, or to become more goal-oriented.

Death anxiety as a disorder

Although it is likely that we will all be worried about death or a death-related situation at some time in our lives, death anxiety is only pathological when it reaches extreme levels, disrupting the normal lifestyle of an individual.

One account of death anxiety – as reported by a man’s worried wife – emphasizes how this kind of fear can become obsessive and get out of control.

The fear is specifically of death (not pain or dying as such) and the emptiness of it (he’s not religious) and the fact that he will no longer be here. […] this is an irrational, emotional fear that he has trouble controlling. Recently it has got worse – he’s not sure why – but it has made him feel panicky and the thoughts have been straying into the daytime.”

Who is afraid of death?

Dr. Robert Kastenbaum has reviewed various psychology theories and studies related to the concept of death, outlining which populations are most likely to express a persistent fear of death. Drs. Patricia Furer and John Walker summarize the findings in an article published in the Journal of Cognitive Psychotherapy.

Women are more likely than men to experience death anxiety, and this tends to peak twice: once in their 20s and again in their 50s.

  1. The majority of individuals are afraid of death. Most people tend to fear death, but they usually only exhibit low to moderate levels of anxiety.
  2. Women tend to be more afraid of death than men. Additionally, a newer study has found that while death anxiety seems to surface in both women and men during their 20s, women also experience a second surge of thanatophobia when they reach their 50s.
  3. Young people are just as likely to experience death anxiety as elderly people.
  4. There appears to be some correlation between a person’s educational and socioeconomic status and reduced death anxiety.
  5. No association has been found between religious engagement and reduced death anxiety.

Specialists argue that more often than not, death anxiety does not come on its own, and that it is instead accompanied by another type of mental health disorder (such as generalized anxiety disorder, panic disorder, post-traumatic stress disorder, depression, or obsessive-compulsive disorder).

Other studies show that people exhibiting health anxiety, or hypochondriasis, are also affected by death anxiety, as it naturally correlates with an excessive worry about health.

Complete Article HERE!

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08/19/17

To Treat or Not to Treat: What Would Your Loved Ones Want at the End of Life?

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Ensuring that the care you get reflects your wishes and values

When someone you love is hospitalized with a grave illness or injury, you may face decisions about their care.

Cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings, surgery, chemotherapy or other interventions may add weeks, months or years to their life.

If your loved one has an advance directive (living will), it will spell out which interventions they want and don’t want. If they don’t have one and can’t speak for themselves, how should you proceed?

To help families learn to make good choices in this situation, Silvia Perez Protto, MD, Director of our Center for End of Life Care, answers key questions below. 

Q: What’s the first thing families should consider?

A: First, determine whether the patient is capable of making a decision about treatment. If so, your best option is to explore their wishes and values:

  • What are they expecting and hoping from treatment?
  • What are the trade-offs of treating versus not treating?
  • What risks are acceptable and not acceptable to them?
  • Which do they value more: quality of life or quantity of days?

Depending on their age, situation and views, answers will vary.

One paralyzed patient may be happy sitting with family and watching TV. Another may not.

One patient may want doctors to extend her life despite pain, nausea, or loss of mobility to see her son graduate from college. Another may be unwilling to experience serious side effects from a treatment that isn’t 100 percent effective.

We want to honor the patient’s wishes. When patients can’t communicate and have no advance directive, we look to families for guidance.   

Q: What’s the best way to start the conversation?

A: I encourage families to talk to loved ones about end-of-life wishes and values before they get sick or develop a serious condition. You won’t go wrong trying to explore someone’s wishes and values.

When I asked my own mother what she wanted at the end of her life, I learned she wanted to be around her five children, to be able to communicate with us and to be independent. This led me to understand that if she became terminally ill and couldn’t recognize us, she wouldn’t want to live like that.

Some people wouldn’t mind being on a feeding tube or a ventilator, unaware of their environment. Others wouldn’t want to live in a vegetative state.

These questions are tough and emotionally difficult to ask mom or dad. Even I got stuck talking to my mom. But we can always ask for help. A spiritual care advisor or palliative care doctor at your hospital can facilitate these discussions.

(And remember to tell loved ones about your wishes and values, too.)

Q: Do larger issues get in the way of these discussions?

A: I think not talking about death is cultural. It’s how we see life, it’s our spiritual background, it’s our own fear of dying.

I’ve heard patients say, “I feel like I’m dying, but my kids don’t want to talk about it.” This isolates them at the end of life. Pain and isolation or abandonment are our main fears when we’re dying.

But the more we talk, the less fear we’ll have. Everybody’s going to die. Avoiding the topic won’t decrease the chances of dying. As a society, we need to normalize death. Being born, growing up, having kids, dying – these are all part of the life cycle.

Q: What questions should you ask about end-of-life care?

A: If you’re worried how an illness may impact the end of your life, talk to your family doctor, primary care doctor or specialist. Ask, “What are the side effects, risks and benefits of the treatment you’ve recommended?” Once you have that information, see how it lines up with your wishes and values.

If you want your doctor to keep trying to treat the disease, we can provide palliative care along with the treatment, controlling your symptoms and minimizing your pain. If you choose to end treatment, it doesn’t mean we’re giving up. We’ll still provide palliative care right up until the end.

Our goal in the ICU is always to get patients better and back to a functional life at home. But that’s not always possible. We can aim either to extend life or to offer the best quality of life in the time the patient has left.

These conversations and advance directives show us how to proceed and help us allow patients to die with dignity.

Q: Are there proven benefits to end-of-life planning?

A: Yes. Studies show that when advance care planning is done, the family’s experience and the patient’s experience are better. In the United States, autonomy is very important. Advance directives help you maintain your autonomy at the end of life.

Healthcare providers are encouraged to obtain advance directives and document patient’s wishes in their chart for all caregivers to see.

Q: Any final word for families?

A: I encourage families to see death as a natural act and to understand the value of a natural death. We can do many things to extend life, but sometimes the price we pay is having no quality of life.

Complete Article HERE!

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08/18/17

A Quaker Approach to Living with Dying

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By Katherine Jaramillo 

I’ve been present with hundreds of people as they’ve died, hundreds more who were already dead by the time I was paged, and hundreds more who were in their dying process. I’ve accompanied spouses, parents, children, friends and family members as they’ve experienced the horror and sorrow of grief. For the past 20 years, I’ve been a chaplain, mostly in hospitals, a few with hospice. In doing this work, I’ve crossed death’s path more often than I can count as I’ve zigzagged my way through the hospital corridors and in the homes of folks experiencing the last days, weeks, months of life. Those of us on the interdisciplinary healthcare team struggle, as best we can, to provide our dying patients with a “good death,” however they and their families define such. There’s a saying in healthcare, “People die as they have lived.” Sometimes that is not the case, but, more often than not, that’s the way it goes.

Often, Quakerism is defined as a way of life. Some questions that I have carried for years in the ministry of chaplaincy include the following:

  • What does our Quaker faith and spirituality offer us as we face decline, diminishment, and death?
  • What can we say, as Quakers, with regard to dying and death as a personal and spiritual experience?
  • Is there a Quaker way of dying? How do we, as Quakers, do this?

My formative experience with regard to the Quaker way of dying was by accompanying a Friend through her decline and death. Her final illness, dying process, and death were Quaker community and meeting experiences. Her experience wasn’t a private or family-only affair. When she couldn’t come to meeting, small groups of Friends were dispatched to her home, hospital, or nursing facility to have meeting for worship with her. Friends from meeting stayed with her overnight in the hospital when she had to be on the breathing machine and was so uncomfortable and scared. She had a committee of trusted Friends who arranged for her practical needs when she was still able to live independently, including staying with her 24/7 when just home from the hospital and at times of extreme debility. These Friends helped with discernment regarding transition from independent living to a skilled nursing facility. In what turned out to be her final hospitalization, these Friends helped her discern her choice to decline heroic life-sustaining treatment and allow herself a natural death. Friends reflected with her about her desire for integrity and living in alignment with the testimonies, her beliefs about an afterlife. She was afforded the opportunity, though her Quaker way of living, to proceed to a Quaker way of dying. One First Day, as we knew death was approaching, our meeting of about 80 Friends decided to meet in a hospital conference room for worship. About halfway into the worship hour, a Friend came downstairs to announce our Friend’s death. It was a gathered meeting. Our Friend died the way she had lived.

Last year, desiring conversation on these questions, I facilitated an interest group I called “The Quaker Art of Dying” at the Pacific Northwest Quaker Women’s Theology Conference. The conference brings women together from the divergent Friends traditions in the Pacific Northwest, primarily from Canadian, North Pacific, and Northwest Yearly Meetings, as well as other independent meetings and churches, to articulate our faith and to learn from each other. The group was well attended and diverse. I presented three queries to the group for discussion. We broke into small groups each taking one of the queries, then reconvened into the large group to get the bigger picture.

What is a Quaker approach to declining health, dying, and death?

Friends reported their understanding that all life is sacred and Spirit informs all life. A Quaker approach would be a mindful, conscious, and prepared approach, with an excitement—or at least a willingness—to enter the mystery of death. It was agreed that a Quaker approach would involve less denial that someone is dying or that death is imminent. There is a value for listening, hearing one another’s experiences, and entering new situations with curiosity, not offering answers. Especially for Liberal Friends, but for some Evangelical Friends as well, there was less focus on an afterlife. A Quaker approach would be a well-ordered approach, with orderly records, legal documents, and final letters and lists of wishes. Friends agreed that cremation was customary and in alignment with Quaker values. The writing of a memorial minute was another Quaker tradition to document the passing of a Quaker life. As one Friend stated, “The Quaker approach is portable; you can take the heart of the Quaker way wherever it needs to go.”

How do our beliefs, testimonies, and values inform our approach to the end of life?

Friends agreed in their understandings that we have a direct connection with the Divine. Some Friends voiced a lack of fear about death. Others voiced fears about the decline of physical and cognitive abilities and the actual process of dying, such as the possibility of pain, loss of competence, being a curmudgeon, or depleting family resources. One Friend likened the burdens of dying to birthing: “Both are hard work.” Friends agreed that upholding the dying person in community benefits the community as well as dying person. Friends voiced an intention to allow support and presence of others as we approach the end of life, as well as taking all the alone time we need.

How can we prepare for death? Our own and that of our loved ones? A list emerged.

We need to:

  • Pray.
  • Think about what we want.
  • Talk about what we want, even though it is difficult, especially with our children.
  • Talk about what others want.
  • Talk with our families about our wishes.
  • Pray some more.
  • Deal with unfinished business—either finishing it or leaving it unfinished, but dealing with it intentionally.
  • Educate ourselves about health decline and the dying process by reading books like Atul Gawande’s Being Mortal.
  • Talk with our spouses or significant others, about things we’ll need to know if they can’t tell us themselves for whatever reason.
  • Prepare for the process:
    • Who do we want involved? Who do we not want involved? Do we want a care committee or not?
    • How do we want our remains disposed? Do we prefer cremation or burial? If we want to be cremated, do we want our remains to be scattered, interred, or buried?
    • What do we want for a memorial or funeral?
    • Do we want an obituary; a eulogy? What would we want said in our memorial minute?
  • We need to help meetings and churches be prepared for the decline, debility and deaths of their members and attenders.
  • Keep praying.

This conversation continues. In a recent meeting of our Quaker women’s discussion group, I facilitated a robust discussion about a Quaker approach to end-of-life issues and posed similar queries to the group. Evangelical Friends spoke of the “continuum of life” that transcends death, the need for “being right with God,” and the peace that “being with Jesus” will bring. Liberal Friends spoke of “entering the mystery” and “going into the Light.” There seemed to be agreement and assurance that “all will be well” at the end of physical life. Some women focused on the need to enter this time of life with their “affairs in order.” Other women spoke of their experiences accompanying a dying person in their meeting or church or in their own families. All seemed to enjoy the discussion of “things we don’t usually get to talk about” and voiced an intention to encourage further discussion in our churches and meetings. Later this month, I will attend my own meeting’s retreat where the topic will be “Spirituality As We Age.” No doubt, we will be continuing the discussion of how we Quakers intend to die as we have lived.

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08/17/17

Medical Aid in Dying: What My Dog Taught Me

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by

He was sick, but it wasn’t like he was going to die anytime soon. A year ago, my dog Sierra sustained a neurological insult that left him delirious, unable to walk straight and almost entirely blind and deaf. Still, he enjoyed our loving touch, snuggling against my thigh as I watched a movie or falling asleep in my arms while being held. I struggled with these thoughts as the vet pushed the pink, fluid-filled syringe into his vein. He collapsed into my arms and let out a groan, as he had many times before. But this time, he did not get up.

I said goodbye and left him to join my parents standing in the waiting room. My father looked up at me, “Is it done?” I nodded, and suddenly, we all broke into tears. We embraced each other and talked about what a good dog he was. We told each other it was the right thing to do, that it was time. But was it? Why now?

I couldn’t help but think we were being selfish. Objectively, nothing much had changed since his suspected stroke, albeit he was undoubtedly more of a burden. We were constantly cleaning up after him, redirecting him when he got caught in a corner and paying for vet visits and medications. But the bottom line was that he still found enjoyment in life. Was the choice to put him down for our wellbeing or for his?

Health professionals and loved ones struggle with these same questions when caring for those nearing the end of life. Sierra’s decline came at a poignant time, one in which many are fighting for the right to choose death in the face of terminal illness or suffering. Currently, five states allow those with a terminal illness and a prognosis of less than six months to end their life with the help of a physician, also known as “medical aid in dying.” Canada legalized physician-assisted death in 2016, joining a small number of countries that have laws enabling this practice.

The principle behind these laws is relatively simple. People want to die with dignity, and in the process of fighting for the right to do so, they’ve ironically improved end-of-life care. As a free nation that claims to be a leader in health care, why have we not adopted this practice? While poking fun at “the land of the free,” Jim Jeffries, an Australian comedian known for his outsider political commentary, pointed out that “assisted suicide for the sick … is the biggest freedom of them all.”

Opposition to physician-assisted death comes from both the public and from within the medical profession itself. Deeply rooted societal ideals, values and norms fuel the debate. From day one, physicians take an oath to “do no harm.” Common sense tells us that healthcare professionals are supposed to help heal the sick, not to “help” them die. Furthermore, for some patients, taking one’s life goes against their religious values and/or our fundamental values as human beings. Also, many families find that loved ones nearing the end of life are often incapable of making well informed decisions due to fear, depression or the effects of disease on their mind. And so we choose life, even when death seems so near.

Despite the moral controversy, attempts have been made at giving patients the right to take control of their own death in the United States. Numerous court cases have brought the legality of this practice into light culminating in the 2006 Supreme Court case Gonzales v. Oregon. Under this ruling, the federal government failed to prohibit physicians in Oregon from prescribing drugs to help patients die, opening the door for states to legalize medical aid in dying. Organizations such as the Death with Dignity National Center have taken it upon themselves to both educate the public on end-of-life options and to advocate for physician-assisted death. Even so, there has been little done to legalize this practice in federal law.

Lawmakers took a step in the right direction during discussions about health care reform and the implementation of the Affordable Care Act (ACA). The misleadingly-termed “death panels” were a way to incentivize physicians to have discussions about end-of-life care with their patients. Unfortunately, this section of the ACA was thrown out due to political controversy. Finally, in 2015, the Centers for Medicare and Medicaid services approved regulations that allow qualified healthcare professionals to be reimbursed for providing advance care planning to patients. Still, moral and legal barriers persist, preventing patients from making the decision that is right for them.

Looking back, I am grateful that Sierra left us when he did. Choosing to put him down was not easy, but afterwards, I came to an important realization. By choosing death at that moment, we determined when, where and how he died. We chose a period when our family was home together so that we could spend quality time with each other in his last moments. This pronounced the end of our living relationship, giving us a sense of completion. We made sure that he died with us, in a peaceful environment, around those he loved instead of alone on the kitchen floor. He was able to leave the world peacefully and quietly without the suffering of a drawn out painful death that would taint our memory of his long and happy life. Sometimes, I wonder if the groan he let out at the end was a sigh of relief, a goodbye or even a thank you.

Complete Article HERE!

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08/16/17

Many Avoid End-Of-Life Care Planning, Study Finds

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People with chronic illnesses were only slightly more likely than healthy individuals to put their wishes down on paper in a living will.

By Michelle Andrews 

Before being deployed overseas for the Iraq war in 2003, Army reservist Don Morrison filled out military forms that gave instructions about where to send his body and possessions if he were killed.

“I thought, ‘Wow, this is mortality right in your face,'” Morrison, now 70, recalls.

After that, his attention was keenly focused on how things might end badly. Morrison asked his lawyer to draw up an advance directive to describe what medical care he wanted if he were unable to make his own decisions.

One document, typically called a living will, spells out Morrison’s preferences for life-sustaining medical treatment, such as ventilators and feeding tubes. The other, called a health care proxy or health care power of attorney, names a friend to make treatment decisions for him if he were to become incapacitated.

Not everyone is so motivated to tackle these issues. Even though advance directives have been promoted by health professionals for nearly 50 years, only about a third of U.S. adults have them, according to a recent study.

For the analysis, published in the July issue of Health Affairs, researchers reviewed 150 studies published between 2011 and 2016 that looked at the proportion of adults who completed advance directives. Of nearly 800,000 people, 37 percent completed some kind of advance directive. Of those, 29 percent completed living wills, 33 percent filed health care proxies and 32 percent remained “undefined,” meaning the type of advance directive wasn’t specified or was combined.

People older than age 65 were significantly more likely to complete any type of advance directive than younger ones — 46 percent of older people, versus 32 percent of those who were younger. But the difference between people who were healthy and those who were sick when they filled out the directive was much smaller — 33 percent compared with 38 percent.

To encourage more physicians to help people to plan for their care, the Medicare program began reimbursing them in January 2016 for counseling beneficiaries about advance-care planning.

This study doesn’t incorporate data from those changes. But it can serve as a benchmark to gauge improvement, says Dr. Katherine Courtright, an instructor of medicine in pulmonary and critical care at the University of Pennsylvania. She is the study’s senior author.

There are many reasons that people are reluctant to sign a living will. “Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want [cardiopulmonary resuscitation],” says Courtright. “It becomes this very scary document that says, ‘Let me die.’ ”

Living wills also don’t account for the fact that people’s wishes may change over time, says Dr. Diane Meier, a geriatrician and the director of the New York-based Center to Advance Palliative Care.

“In some ways, the public’s lack of excitement about this is related to the reality that it’s very hard to make decisions about the kind of care you want in the future when you don’t know what that will be like,” she says.

Sometimes as patients age and develop medical problems, they’re more willing to undergo treatments they might have rejected when they were younger and healthier, Meier says.

“People generally want to live as well as they can for as long as they can,” she says. If that means going on a ventilator for a few days in order to get over a bout of pneumonia, for example, many may want to do that.

But if their living will says they don’t want to be put on a ventilator, medical staff may feel bound to honor their wishes. Or not. Although living wills are legal documents, medical staff and family members or loved ones can reinterpret them.

“At the moment, I’m very healthy,” Morrison says. If he were to become ill or have a serious accident, he’d want to weigh life-saving interventions against the quality of life he could expect afterwards. “If it were an end-of-life scenario, I don’t want to resuscitated,” he says.

If someone’s wishes change, the documents can be changed. There’s no need to involve a lawyer in creating or revising advance directives, but they generally must be witnessed and may have to be notarized.

While living wills can be tricky, experts strongly recommend that people at least appoint a health care proxy. Some even suggest that naming someone for that role should be a routine task that’s part of applying for a driver’s license.

“Treatment directives of any kind all assume we can anticipate the future with accuracy,” says Meier. “I think that’s an illusion. What needs to happen is a recognition that decisions need to be made in real time and in context.”

That’s where the health care proxy can come in.

But to be effective, though, people need to have conversations with their proxy and other loved ones about their values and what matters to them at the end of life.

They may tell their health care proxy that they want to die at home, for example, or that being mobile or able to communicate with their family is very important, says Jon Radulovic, a vice president at the National Hospice and Palliative Care Organization.

Some may opt to forgo painful interventions to extend their lives in favor of care that keeps them comfortable and maintains the best quality of life for the time that remains.

“The most important thing is to have the conversation with the people that you love around the kitchen table and to have it early,” says Ellen Goodman, a Pulitzer Prize-winning writer who founded The Conversation Project, which provides tools to help people have conversations about end-of-life issues.

Morrison says he’s talked with his health care proxy about his wishes. The conversation wasn’t difficult. Rather than spell out precisely what he wants done under what circumstances, Morrison is leaving most of the decisions to his health care proxy if he can’t make his own choices.

Morrison says he’s glad he’s put his wishes down on paper. “I think that’s very important to have. It may not be a disease that I get, it may be a terrible accident. And that’s when [not knowing someone’s wishes] becomes a crisis.”

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08/15/17

How to Find Meaning in the Face of Death

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By Emily Esfahani Smith

The psychiatrist William Breitbart lives at the edge of life and death. As chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center in New York, Breitbart specializes in end-of-life care for terminally ill cancer patients. For many of his patients, the most pressing question isn’t when they’ll die or how painful death will be. Rather, it’s what makes life meaningful. They are in search of a meaning that cannot be destroyed by death.

Breitbart has spent the better part of his career trying to answer that question. His ground-breaking research shows that while the specter of death often leads people to conclude that their lives are meaningless, it can also be a catalyst for them to work out, as they never have before, the meaning of their lives.

When people believe their lives are meaningful, according to psychologists, it’s because three conditions have been satisfied: They feel their existence is valued by others; they are driven by a sense of purpose, or important life goals; and they understand their lives as coherent and integrated. Psychologists and philosophers say that the path to meaning lies in connecting and contributing to something that is bigger than the self, like family, country, or God.

Breitbart’s interest in meaning took root in his childhood. Born in 1951, Breitbart grew up on the Lower East Side of Manhattan. His parents, Jews from eastern Poland, narrowly avoided Hitler’s death camps. When they moved to America, they carried their memories of the war years with them. Breitbart’s childhood was steeped in that tragic past. Every morning, his mother would ask him at the breakfast table, “Why am I here?” Why, she wondered, did she live when so many others had died?

“I grew up with a sense of responsibility to justify my parents’ survival and to create something in the world that would be significant enough to make my life worthwhile. It’s no coincidence,” he laughed, “that I ended up at Sloan Kettering.”

Breitbart began working at the hospital in 1984 during the height of the AIDS epidemic. Young men his age were dying all around him. As he tended to them, “They were constantly asking me to help them die,” he said. He was also working with terminal cancer patients. “When I walked in the room, they would say, ‘I only have three months to live. If that’s all I have, I see no value or purpose to living.’” They told him, “If you want to help me, kill me.”

If death means non-existence, Breitbart’s patients reasoned, then what meaning could life possibly have? And if life has no meaning, there’s no point of suffering through cancer.

By the ’90s, physician-assisted suicide was a hot topic in Breitbart’s circles and beyond. The doctor Jack Kevorkian had helped his first patient end her life in 1990. As the United States debated the ethics of assisted suicide, other countries were taking steps toward normalizing the practice. In 2000, the Netherlands became the first nation to make physician-assisted suicide legal. Today the practice is legal in the United States in California, Vermont, Montana, Washington, and Oregon.

As Breitbart heard more stories of assisted suicide, he began to wonder what specifically was driving the terminally ill to give up on life. At the time, he was doing research studies on pain and fatigue at the end of life, so he tacked onto those studies some questions that asked his subjects whether they felt a desire for a hastened death. What he discovered surprised him.

They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life.

The assumption had been that the ill chose to end their lives because they were in terrible pain. But Breitbart and his colleagues found that wasn’t always the case. Instead, those who desired a hastened death reported feelings of meaninglessness, depression, and hopelessness. When Breitbart asked patients why they wanted a prescription for assisted suicide, many said it was because they had lost meaning in life. Unlike clinical depression, which has a specific set of diagnosable symptoms, meaninglessness was more of an “existential concern,” Breitbart said—a belief that one’s life has little value or purpose and is, therefore, not worth living.

Breitbart knew he could treat depression—there were medicines and well-developed psychotherapies for that—but he was stumped when it came to treating meaninglessness. Then, in 1995, he began to see a way forward. He was invited to join the Project on Death in America, which aimed to improve the experience of dying. Breitbart and his colleagues on the project—including philosophers, a monk, and other physicians—had long conversations about death and the meaning of life, “peppered with references to people like Nietzsche and Kierkegaard and Schopenhauer,” Breitbart said. “What I suddenly discovered,” he explained, was that “the search for meaning, the need to create meaning, the ability to experience meaning was a basic motivating force of human behavior. We were not taught this stuff at medical school!”

Breitbart became convinced that if he could help patients build meaning, he could decrease their suicidal thoughts and make their lives worth living even to the very end.

He developed an eight-session group therapy program where six to eight cancer patients come together in a counseling workshop. Each session, in one way or another, helps build meaning. In the first session, for example, the patients are asked to reflect on “one or two experiences or moments when life has felt particularly meaningful to you.” In the second session, patients respond to the question “Who am I?” to tap into the identities that give them the most meaning. One woman responded saying, “I’m somebody who can be very private … [and] have been working on accepting love and affection and other gifts from other people.” In subsequent sessions, they share their life story with the group and think about the role that love, beauty, and humor played in their lives.

In the final session, the patients reflect on the part of them that will go on living even after they are dead—their legacy. That could be their soul, or it could be something they helped to create that will continue to exist—their children, a work of art, or an organization. They present a “legacy project” to the group, generally something they do or create that represents how they want to be remembered. One man brought in a woodcut of a heart sculpted into a Celtic Trinity. “This is what I will teach my children,” he said, “that there is eternal love, and that I will be there for them, far beyond my passing.”

Breitbart performed three randomized, controlled experiments on the meaning-centered psychotherapy. When he analyzed the results with his colleagues, Breitbart saw the therapy had been transformative. By the end of the eight sessions, the patients’ attitudes toward life and death had changed. They were less hopeless and anxious about the prospect of death than they were before they began the program. They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life. And, of course, they found life to be more meaningful. These effects not only persisted over time—they actually got stronger. When Breitbart followed up with one group of patients two months later, he found that their reports of meaning and spiritual wellbeing had increased, while their feelings of anxiety, hopelessness, and desire for death had decreased.

The time between diagnosis and death, Breitbart has found, presents an opportunity for “extraordinary growth.” One woman, for example, was initially devastated by her diagnosis of colon cancer—but after enrolling in the therapy program, she realized, “I didn’t have to work so hard to find the meaning of life. It was being handed to me everywhere I looked.” And that realization ultimately brought her—and Breitbart’s other patients—some measure of peace and consolation as they faced life’s final challenge.

Complete Article HERE!

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