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.”

Complete Article HERE!

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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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08/14/17

A New Game Helps You Navigate Difficult End-of-Life Conversations

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By Michelle Woo

Call it the new game of Truth. Players go around the table answering questions in their little blue booklets, but these questions aren’t geared to get them talking about that one time they went skinny dipping in Maui. Instead, the questions aim to launch difficult conversations, ones that may be painful, ones they may have been avoiding for far too long.

“Who haven’t you talked to in more than six months that you would want to talk to before you died?”

“What music do you want to be listening to on your last day alive?”

“Which is more frightening to imagine: suffering the worst physical pain of your life or not getting a chance to say goodbye to your family?”

This game is called Hello, and its goal is to get people talking about end-of-life issues in a way that’s easy and non-threatening. The most revolutionary aspect of it—and it’s such a simple thing—is that everyone can and should play. (Newsflash, friends: we’re all gonna die.) So often when it come advance care planning conversations, we single out the person who is sick or elderly, and it can feel like an interrogation. That is, if we even get to the conversations at all. According to Nick Jehlen, the lead designer of the game, people are often too nervous or distraught to delve into these real, complex discussions, or they feel it’s never the right time. The talks, he says, “just don’t happen.”

Families, friends, organizations and healthcare teams have gotten together to play Hello, which is created by Common Practice, a company that promotes better conversations about living and dying well. Some of the questions were written by backers of the Kickstarter campaign for their original game, My Gift of Grace. The topics range from the logistical (“If you needed help going to the bathroom today, who is the first person you would ask to help you? Who would you never be able to ask?”) to the abstract (“What do you think happens to you after you leave this life?”). Each player gives out game chips—“thank you chips”— to other players as they feel moved to, which creates, as Jehlen describes, “an economy of gratitude” within the game.

Jehlen says,“It’s challenging, and sometimes people do cry, but what we’ve really done is create a set of structures that help people be supportive of each other. Almost every time I play with a new group, people share things they’ve never talked about before, and just as importantly, they feel good about it.” He adds, “It sounds crazy, but the game is fun.” Of people who play Hello, 75% go on to complete an advance care planning step within a few months.

Talking about our own mortality doesn’t just save others from guilt, trauma and expense down the road—these conversations can actually improve our quality of life. They help us to really narrow in on what matters to us here and now. Perhaps a game can help get the ball rolling.

Complete Article HERE!

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08/12/17

Tidy transition can ease caring for dying parent

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By Glenn Ellis

There are two things that movies consistently get wrong: sex and death. Unfortunately, as a society, we spend far too much thinking of sex, and too little time devoted to death – especially of a parent.

Caring for a dying parent is a difficult and emotionally challenging task. However, effective communication can ease the transition.

Movies consistently present death in a false or unrealistic way. Real-life death is not always dignified, simple or tidy. Indeed, death can be upsetting, messy, painful and traumatic experience for all parties involved.

Complications can arise during the course of an illness can lead to increasingly worsening circumstances. Immobile or semi-mobile patients may feel determined to walk and my try to get out of bed. As a result, some may fracture or break their hip. As bad as terminal illness is, additional complications can make quality of life worse. Patients may become restricted to their bed and may rely on a catheter.

Regardless of the attempts to prevent it, as soon as they return home, complications such as a yeast infection or urinary tract infection may occur. This causes a patient to become even more frightened and restless. How is anyone supposed to take care of a dying person? It’s a fairly straightforward to concept “nurse” a person back into good health, but how is anyone supposed to “nurse” them into death with dignity and compassion?

Then there’s the morphine. Dying parents may often feel agitated and restless, so much so that they might try getting out of her bed. The morphine may help to calm them down. Is it unethical to give it to them to address mental rather than physical pain? Although her hip fracture causes pain. Many children give their parents morphine more for their parents restlessness.

The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether or not to give someone’s organs away while they’re still conscious in another room.

These are the kinds of issues that children with dying parents struggle with every day. Many adult-children caregivers believe that their ill parent wouldn’t have wanted to live this kind of existence. They may have stated that they didn’t want a lingering, drawn-out death. This is why advance directives are so essential.

If you’re like most families (including mine), generally, the care of a dying parent falls on the shoulders (and back) of one sibling or family member. Although it’s rare for siblings to share parent care equally, it’s a family responsibility. Not treating it as such “will haunt you” later on. Even if you live far away from your ailing parent, you can still help out.

From ordering car service a couple times a week to paying bills online, anything that can be done via telephone or internet is within your reach, she notes. Just calling your mom more often “so she’s not so needy” can provide relief to the sibling carrying the heaviest load, says Russo, as can making the trip to be with your mom whenever possible, so your sibling can take time off.

End-of-life care is something that few people like to think about, let alone discuss. Avoiding the subject until it’s unavoidable, however, can be a “huge mistake” with devastating consequences for the sibling relationship. Call a family meeting when your parents are still healthy.

Such a conversation might start this way: Remember aunt so-and-so, and how our cousins were still fighting when she was on the respirator and they wouldn’t let her die and how painful that was for everybody?

We don’t want that to happen in our family.

Mom, Dad, do you have a living will? Have you assigned somebody to be the healthcare proxy? Though they may attempt to deflect such questions: nudge further. If you were on a respirator or in really bad shape, would you want us to do everything possible, or would you just want to go quietly? Who should make that decision? We’ll all want to do what’s right, but we may have different feelings.

It’s time to start an honest and open discussion of what dying really means. How can we help someone we love to pass on? What do “extraordinary measures” mean to different people? To some, it may mean CPR. For others, it might mean giving any medications that can help. Furthermore, what constitutes a tolerable living standard? For instance, what happens when someone is bedridden or unable to control their bowels?

There are few things more difficult than saying goodbye to a dying parent. These questions are undoubtedly tough ones. In most cases, they’re mentioned far too late.

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