6 Ways to Reduce Stress at the End of Your Life

It’s not easy nearing the end of your life, but that doesn’t mean you need to be stressed.

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Death may be the ultimate stressful moment in our lives. Just thinking about the end is enough to cause your heart to beat faster. And while some levels of depression and anxiety are inevitable, those feelings need not overwhelm the death experience for you or your family. In fact, it’s possible to die well — to experience a sense of wellbeing as you approach the end. You can leave this life with a feeling of closure and a sense of contentment. That’s the difference between completing your life and merely ending it.

But stress disrupts well-being. It distracts you from prioritizing love, family, and dignity. Worry and fear interrupt precious time with family and friends. That’s no one’s idea of a good death. And while it’s easy to think you’ll skip this stressful step and go suddenly from a heart attack or stroke, the reality is the majority of us will need end-of-life care. So, put some thought and preparation into your passing now. Reducing stress will make it easier for you to say goodbye, and for your loved ones to let go. Here are six ways you can make dying the experience you want, rather than the experience you get.

Finalize Your Burial Arrangements

Preparing your burial arrangements lowers stress in several ways. For one, it puts you in control. Eliminate worry by outlining the type of service you want, the manner of internment, and the organ donation process. Burial arrangements also relieve financial stress from your family and friends. Carrying out your last wishes doesn’t have to be a financial burden for your family. So, find the best final expense insurance policy to cover costs. Or get a pre-paid funeral plan that kicks in after you’re gone. You’ll feel less stress knowing everything is taken care of.

Finally, by tending to your funeral arrangements yourself, your loved ones can focus more on spending time with you in your last day. And their grieving will be easier when they’re not weighed down with administrative tasks. Mourners often feel guilty devoting time to such business matters after a loved one dies.

Create a Living Will

If you become incapacitated before death, someone will have to make decisions for you. That’s a heavy responsibility to place on a family member or friend who may only have a rough idea of your wishes. But without a health care power of attorney (or proxy) to speak for you, you may end up being kept on life support longer than you’d prefer, or the opposite. An advanced directive or “living will” is a legal document that lists specific medical treatments you wish to receive and those you don’t. The directive takes the decision-making burden off your family’s shoulder.

To get started, have the end-of-life conversation with one or two people you would want to serve as your proxies. And also talk with your doctor so that everyone is on the same page. Living will forms vary by state. So, download your state’s advanced directive form to get started. If you don’t have the resources to create a living will, other forms of non-legal directives can work as some form of “proof” for your wishes. For example, write a letter to a family member expressing your wishes. Or record audio/video explaining what you want. While these aren’t formally recognized legal documents, they work better than nothing at all.

Make Amends

One thing that makes dying harder is knowing you’re leaving behind unsettled issues, old hurts, and past grudges. When possible, make amends with those you’ve hurt or who’ve hurt you. Now is the time for unburdening yourself and being honest with those you love. While you can leave those hurt feelings behind, your loved ones will carry them after you’re gone. And many will regret they didn’t say something when they had the chance. Knowing this will make leaving this life more stressful for you.

So, don’t put off making amends. Request a private audience with a loved one or wait for the right moment to broach the subject. Be honest and take responsibility for your part in the situation. Refer to the past event/issues that caused the rift, but don’t relive it all over again. And don’t bring up their responsibility; just explain your regrets and apologize. They will reciprocate. Think of this less as a discussion and more as a confession. So, listen more than you talk. The goal of making amends is to replace hurt and anger with forgiveness and love.

Revisit the Past

For those facing imminent death, the bulk of the conversation often focuses on medical needs, medications, or staff visits. While these are immediate needs are necessary, don’t forget the past. Revisiting old memories help us replace the current situation with one of our choosing — at least for a moment. Rather than a form of denial of death, recalling memories is an affirmation of our lives and our effect on others. For friends and family, recounting a past event is a handy way to show how a dying loved one impacted their lives. It’s often difficult for the dying person or loved one to find the right words in these moments. Words of condolence or regret can seem empty. But a pleasant or meaningful story can be a beautiful expression of our gratitude.

Recalling old memories is also a stimulating activity for Alzheimer’s patients. It fosters emotional connections and reduces anxiety. Use family albums, music, videos, or heirlooms to help prompt memories. Encourage family and friends who can’t travel or live too far away to send a short letter or audio recording. And don’t avoid humor. Include funny moments, old jokes, or humorous anecdotes. It may feel awkward at first, but laughter is nature’s way of helping us relieve stress and anxiety while connecting us.

Use Music Therapy

Studies suggest that music therapy has emotional and physical benefits for hospice and palliative care patients. Researchers found that patients who listened to music reported “less pain, anxiety … as well as an increase in feelings of well-being afterward.” Music therapy has a profound effect on people with cognitive and mental decline. The rhythmic nature of music requires little mental processing and helps stimulate memories. Choose music that your loved one enjoys, tunes from their childhood era, or a neutral New Age track. But don’t overstimulate; that can create stress. Take note of the other noises in the room. When mixed with many different sounds, even soothing music at a low volume to create a cacophony of stress.

Ask for Pain Medication When You Need It

Palliative care is about making patients feel as comfortable as possible until the end. And pain management and medication are part of this process. Unlike other vital signs, hospitals and staff can’t measure your pain. You have to help them know when you’re feeling discomfort. Still, some patients forego their pain meds because they want to stay awake to see their friends and family. Others see pain medication as “bad” substances or only for the weak or needy. But these are myths. Pain meds are integral to the palliative care process. And there’s no reason to forego pain medications that’s more important their your comfort. You may think you’re being strong for your family, but having to watch you fight intense discomfort will only increase their stress levels. Ask for pain medication when you need it.

These six tips will increase well-being and reduce stress when you’re nearing the end of your life. But once you’re faced with death, it’s important to know when it’s time to let go. Too often, we hold on too long out of a primal urge to keep going or fear of leaving our loved ones. Death is a natural process we all share. Take comfort in that immutable fact. Let your loved ones know you’re ready to go. They, too, will hold on to you, fearing that letting you go is “giving up.” This creates enormous amounts of stress. When it’s time, reassure them that — while you’re not ready to die — you have accepted it.

Complete Article HERE!

To die well, we must talk about death before the end of life

In a research study, 84 per cent of residents and families who received a pamphlet about end-of-life choices felt encouraged to think about their future care.

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I would like to tell you an all-too-familiar story. It begins with a long-term care home resident, Laura, who has multiple chronic conditions and gets an infection that doesn’t get any better.

Her health has been declining for months, but no one has talked to her about her preferences for end-of-life care. In the absence of that knowledge, she is sent to the hospital where she undergoes stressful tests.

The story ends with Laura dying in the hospital, alone and frightened. Her family is traumatized, and so are the staff who have cared for her over the past year.

It’s a simple fact that 100 per cent of us will die. Conversations about our future health care and what’s important to us — called advance care planning — have shown distinct benefits.

In fact, research shows that as many as one third of seriously ill, hospitalized older people are receiving invasive treatments they don’t want at end-of-life, because no one has talked to them about their wishes for future care. This is true even in long-term homes, where the average lifespan is less than two years.

Pamphlets help stimulate conversation

How do we change those statistics and give our older people the care they want — and deserve? My team’s research has focused on answering that question over the past six years.

We recently developed a series of pamphlets and distributed them in long-term care homes to try to get the conversation started.

The pamphlets were disease-specific (for example, focusing on dementia), and included information about life-limiting illnesses, what to expect and tips for talking about wishes for the future.

In our study, 84 per cent of residents and families who received a pamphlet felt encouraged to think about their future care and 70 per cent felt clearer about what to talk about.

Planning death is a great relief

Moving from thinking to discussion, however, was a different matter. Family members worried that bringing up the subject would destroy hope. Residents thought they should protect their families from thinking about their death.

And many long-term care home staff indicated that they did not feel trained to participate in these conversations — in fact, only 21 per cent handed out the pamphlets, preferring instead for families or residents to take them from a display board.

Encouragingly, the 56 per cent of residents and families who did have conversations after receiving a pamphlet expressed great relief. A typical response from families was: “It makes it easier for me right now because now I don’t have to guess.”

Death is taboo, globally

The problem goes beyond long-term care homes. A striking 93 per cent of Canadian participants in a recent poll think it’s important to communicate their wishes for future care should they become seriously ill, but only 36 per cent have actually done so.

That may seem shocking. But according to the World Health Organization, Canada is actually ahead of most European countries.

Clearly, talking about death and the end of life is still taboo around the world.

Informational resources such as our pamphlets can be a great first step in helping all parties gain clarity on what to be thinking and talking about. But because residents and families tend to protect one another, staff need to take more active roles in supporting such conversations.

Care home staff need training

That means we need to clarify roles and provide the necessary training to support long-term care home staff, especially those who develop strong relationships with residents.

We have an aging population, and thanks to technological advances, more of us are living longer with frailty and chronic conditions. We need to find ways to communicate what’s important to us, so that we receive the care that’s right for us.

I would like to be able to tell you a different story. It begins with a care home resident, Sam, who gets an infection and is not getting better, even with antibiotics.

Sam has been living with multiple chronic conditions for some time and his family knew frequent infections could be a sign that the end of life was near. The family also knew that he wanted to die in the long-term care home and not in a hospital — because they had talked about this when he was healthier and could communicate his desires.

Sam dies, but with dignity and in peace and, most importantly, in keeping with his own wishes.

Complete Article HERE!

Five Wishes

A Simple Tool to Write Your Living Will

By Taylor Schulte, CFP,

End-of-life planning is more than just what kind of care you want in your final days. It’s about such personal choices as who you want with you when the time comes and what will bring you and your family comfort and peace.

As a financial adviser, one thing I do is assist my clients with end-of-life documents that determine how their estates will be handled upon death. But there’s more to end-of-life planning than deciding who gets what and minimizing estate and inheritance taxes. There are also the emotional aspects of death to deal with … and those details can be more important than anything else.

Want proof? Ask anyone on their deathbed what they really want people to know.

Chances are good their answers will have nothing to do with the S&P 500 or the size of their portfolio. Instead, final thoughts tend to be about loved ones, missed opportunities and forgiveness for things that cannot be undone.

This is where Five Wishes comes in and why I interviewed Paul Malley — president of Aging with Dignity, the organization that created Five Wishes — on the Stay Wealthy Retirement Podcast.

In case you’ve never heard of it, Five Wishes is a document that lets you decide your final wishes as well as how you’ll be treated if you ever become seriously ill. The main point of Five Wishes is letting you make decisions about the end of your life just in case you cannot make them yourself. After all, you may wind up knowing months ahead of time that you’re at death’s door, but the worst can also happen in the blink of an eye.

How Does Five Wishes Work?

Think of it as a living will — or as a conversation piece you can use to collect all your end-of-life wishes in a single place. Five Wishes is a legal document in all states but eight. Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas and Utah all require their own official documentation.

Once you get started filling out your own Five Wishes document, you’ll have many important decisions to make. For example, you’ll be asked to name someone you trust to act as your health care agent, but you’ll also be asked to leave instructions for the types of medical care you want (and don’t want).

In addition, you get to make decisions surrounding your comfort, your dignity and other requests you have — no matter how specific they are.

Paul Malley told me during our interview that often the questions that seem the least important wind up impacting families most. Examples include questions regarding pain management and what it takes for someone to feel comfortable, clean and warm.

For example, would you rather die at home if given the choice? Do you want music playing? Do you want people with you?

“Those little things may sound small, but I can tell you from the messages we receive that this is where the true gift is,” says Malley.

Five Wishes in Practice

Malley says he has heard many stories over the years that have proven just how important having a living will is, but one that comes to mind involves a gentleman who had a stroke and became incapacitated overnight. After speaking to the wife of this man (let’s call her Mrs. Smith) once final arrangements were made, Malley learned all the different ways Five Wishes made Mr. Smith’s passing more bearable.

After her husband’s first day in intensive care, for example, Mrs. Smith noticed in her husband’s Five Wishes profile that he wanted pictures of his grandchildren in the room. Reading that detail, she suddenly felt good about leaving him long enough to go home and get cleaned up, knowing she could bring back all the family photos he wanted to be surrounded with.

At one point, there was a disagreement among her children over whether their father should be taken off life support. But thanks to the details in the Five Wishes document, the entire family learned together that he didn’t want to remain on life support if doctors were sure he would never “come back.”

Thanks to Five Wishes, they all left the room in agreement to do “what dad wanted” — a result Mrs. Smith says would have been unlikely if her husband hadn’t formally expressed his wishes himself.

Finally, Mr. Smith had taken the time to note in his living will that his family members should make peace with each other before he died. The couple’s two sons spoke after a long-term estrangement as a result, which brought Mrs. Smith an immense amount of peace at a very trying time. Not only did she get to see her sons begin speaking again, but she knew her husband’s final wishes were being fulfilled.

This is a good example of how a living will can be much more than a legal document — it can be something that “hits in the heart and soul,” says Malley.

In the end, Five Wishes helps us understand that life is about a lot more than money.

How to Get Started with Five Wishes

If you’re on board with creating a legal document that contains this important information, there’s no reason to delay creating a Five Wishes document as soon as you can — and no matter your age. Unfortunately, it can be difficult to get your family to talk about death in any capacity when they’re just not ready to or have no desire to.

Malley says sometimes it takes several tries for people to get their parents or spouse to make end-of-life decisions regarding their health care, their comfort and their final wishes — but it’s important enough that it’s worth trying as many times as it takes.

If you’re worried about how your family members will react if you broach the subject, consider filling out your own Five Wishes document then asking your family members to talk it over with you. This may prompt them to think over what they will want when the time comes, and it can be a “softer approach” that makes it easier to bring up matters as sensitive as death.

Whether for yourself or someone else, you can access a few different versions of Five Wishes — a hard copy format or an online version. Both options are $5 each, although you can order Five Wishes for as little as $1 per document with a minimum order of 25.

Malley says that, if you already have an advance directive set up, you can use Five Wishes in conjunction with your other documents. Still, you should take the time to go over all your end-of-life information, but especially if your situation has changed over the years — if you were divorced, remarried or your health has deteriorated.

If you live in a state where Five Wishes isn’t recognized as a legal document, you can still fill it out and use it alongside with your state’s form. Fives Wishes even offers specific instructions on how to use both your state form and this document successfully on their FAQ page.

The Bottom Line

At the end of the day, people should be able to explain their end of life wishes in their own words, says Malley. They should be given the time and space to decide how they want the end of their life to look, what kind of care they want to receive, and who they want by their side.

When you don’t make these decisions ahead of time, you’re agreeing to let the chips fall where they may. This may or may not work in your favor, but one thing is for certain — you won’t get a second chance.

Complete Article HERE!

Death and dying – talking to your loved ones

By Karen Kaslow

Death and dying are not common topics of family conversation in American culture. Even when a loved one is critically ill, many families struggle with how and when to share their thoughts and feelings about death and dying with each other.

Hospice workers are in a unique position to interact with families as the process of dying is experienced. I recently spoke with staff members from a couple of local hospice agencies who offered insight and perspective related to individual and family responses to death and dying.

One response that these professionals regularly encounter is a request by the family to not tell the patient that he/she is dying. Sometimes it’s the patient asking the professional to not tell the family that he/she is dying. The professional is asked to not wear a name badge that might say “hospice” on it, and not to introduce himself/herself as from a hospice organization.

Families may react in this manner for several reasons:

  • Fear that their loved one will respond to the news by “giving up”
  • Personal difficulty accepting the circumstances and a “if we don’t talk about it, then it isn’t real” belief
  • Lack of time or energy to have emotionally intense discussions due to the pressures of physical caregiving, financial concerns, job responsibilities, etc.
  • A desire to avoid an appearance of weakness or vulnerability

Although family members may believe they are protecting their loved ones from emotional stress by not talking about death, avoiding these conversations may actually create additional heartache for everyone due to an inability to pursue individual goals for care and experience closure. Even when families tried to hide the fact, in the majority of cases experienced by these hospice workers, their patients who were alert and oriented were aware that they were dying.

One nurse I spoke with identified what she referred to as “the tasks of dying.” When people are aware that the end of life is approaching, their emotional and spiritual focus may change and certain activities may have greater importance, such as:

  • Apologizing for past mistakes
  • Forgiving others for uncomfortable situations/relationships
  • Thanking family members, friends and others who are significant
  • Sharing love
  • Saying “goodbye”

The significance of these tasks was acutely demonstrated by one couple who were receiving services from this nurse. The wife was at the very end of her life, in fact, her physicians could not understand why she had not died days beforehand. Initially, the hospice team believed she was waiting for their daughter to arrive, however, she continued to cling to life despite the daughter’s presence.

The hospice nurse finally asked the husband if he was aware of any unresolved issue for his wife, and he immediately broke down. Many years prior, he had an affair. His wife knew of the affair and they remained married, but they never spoke about it, moving forward as if it had never occurred. With encouragement from the nurse, he acknowledged this situation and requested forgiveness from his wife, and she died within 20 minutes.

How does one initiate conversations about closure and end of life goals for care? For families who are reluctant to tell a loved one that he/she is dying, a question that might be helpful is “What is the worst case scenario if you tell your loved one?”

When speaking with the individual who is dying, recognize that one important concept for those who are near the end of life is legacy. People want to know that their lives mattered. Asking “What are you most proud of?” or sharing an accomplishment of the individual that made an impression on you can open the door to deeper dialogue.

For questions that can help guide the development of goals for care, consideration should be given to not only specific medical treatments, but also how those medical treatments will influence daily life. Defining values with questions such as “What is a good death?” and “Is there something that you want to accomplish?” can help guide care decisions.

For additional reading on this topic visit: https://online.nursing.georgetown.edu/blog/talking-about-end-of-life-care.

Complete Article HERE!

I’m an ICU nurse. I know I need an end-of-life directive.

So why can’t I bring myself to write it?

By Andrea Useem

I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.

The form remains incomplete.

All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.

“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.

I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.

Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.

I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.

And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.

“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.

So why is this undertaking so difficult? And how can we all get better at completing this vital task?

The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.

A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.

“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.

A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.

The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.

In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.

When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.

I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.

To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”

Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.

“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”

Zitter agreed that having conversations with loved ones is vital.

“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”

But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.

“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.

So what can help us all climb over this final existential barrier to end-of-life planning?

I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.

Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.

This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.

Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.

Complete Article HERE!

‘Good Death’

Choosing How to Live and How to Die

By Matt McMillen

Patty Webster heard her mom talk about death. A lot. So often that she and her sisters sometimes had to stop their mother from bringing it up. Her message got through, though.

Before her mom died of a stroke in 2016 at age 73, a previous stroke had already robbed her of her ability to communicate. But her family knew what she wanted at the end of her life because she had made it plain to them. That allowed them to share her wishes with her doctors and others so that she could die as she chose.

“We were her voice,” Webster says. “I didn’t know what a gift all of those talks had been until then.”

Webster works for the Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Founded in 2010, it encourages people to become comfortable talking about the type of care they want — and don’t want — at the end of their lives. A survey the group conducted in 2018 found that 95% of Americans are open to discussions about their wishes. But only about 1 in 3 have talked about what they would want. Five years earlier, however, that number had been closer to 1 in 4. More people, it seems, are talking about how they want to die. Some more than others.

“My family is tired of me talking about it,” Webster says, laughing.

But Webster wants those discussions to continue, and she wants the number of people having them to keep growing. She also wants to clarify: “Don’t talk about death but about how you want to live.”

Expressing your wishes for the end of your life and having them respected: Some call it “a good death.” Others may refer to it as “successful dying.” Ira Byock, MD, prefers “dying well.” A palliative care specialist and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health in Gardena, CA, Byock is also the author of Dying Well: Peace and Possibilities at the End of Life.

“Every one of us as adults should be having this conversation,” he says.

In fact, Byock and his colleagues talk to high school seniors about advanced care planning: “We want to normalize this and make it a part of growing up.”

In a paper published in 2016, researchers reviewed 36 previously published studies to determine the “core themes” of a good death. They looked at the question from three perspectives: the person dying, the family, and health care providers. While 11 themes emerged, all three groups ranked three themes as most important:

  • Deciding how they wanted to die, including who would be with them and having their treatment preferences and funeral plans prepared
  • Approaching death without pain
  • Being emotionally well, meaning their psychological and spiritual well-being has been addressed

States Adapt to Change

In some parts of the country, the conversation includes drugs that end your life. Oregon became the first state to enact the Death with Dignity Act, which voters approved in a 1994 refereundum. After years of court challenges, the law took effect in 1998. It allows residents who are terminally ill, have 6 months or less to live, and are deemed mentally able to make their own decisions to end their lives. Ten years would pass before another state, Washington, would approve its own version. Maine became the most recent state to pass a version of the law. Gov. Janet Mills signed it on June 12. These are the other states where doctor-aided dying has been made legal and when the laws took effect:

  • California (2016)
  • Colorado (2016)
  • District of Columbia (2016/2017)
  • Hawaii (2018/2019)
  • New Jersey (2019)
  • Vermont (Patient Choice and Control at the End of Life Act, 2013)
  • Montana (Although no Death with Dignity law exists in Montana, the state’s Supreme Court ruled in 2009 that the practice was legal.)
  • The laws have sparked opposition. In Maine, for example, the state legislature passed the law by only four votes. In California, the law was overturned in court last year, but an appeals court put a hold on that ruling, and the state’s Supreme Court chose not to review the case. That leaves the law, known as the End of Life Option Act, in effect, though its future remains uncertain.

    Between 2009 and 2017, the most recent year for which statistics are available, 1,364 people in Washington had used the law to end their lives. Last year, in California, 337 people chose to die under the state’s End of Life Option Act. In Oregon, 2,217 terminally ill people have received life-ending drugs over the past 2 decades. Nearly two-thirds used those drugs, while the rest opted not to take them.

    “That’s been the case year after year,” says Peter Lyon, MD, medical director of End of Life Choices Oregon, a Portland-based organization that helps Oregonians navigate the Death with Dignity Act and other final decisions. “Some people just like to know that the medicine is there and available if their pain becomes too severe or their condition worsens a great deal.”

    On average, says Lyon, people do not reach out to his organization until they have about 3 to 4 weeks left to live. One reason: It’s so difficult for many people to think about, let alone talk about.

    “Talking about death is the hardest conversation that families can have,” he says.

    More Than a Medical Decision

    How you want to die is only partly about medical issues, Byock says. It’s also highly personal. And it will mean something different to you than it will to your spouse, your parents, your children, and others. To reach your own definition, Byock advises you take stock.

    “Ask yourself, ‘If I’m seriously ill, what would matter most to me?’” he says. “For the vast majority of us, it’s other people. We are hard-wired to matter to one another.”

    Your conversations, of course, should address practical matters, like life insurance information, how to access your safe deposit box, how to close your bank account — and your Facebook account — and more. Byock recalls how much that meant to him after his mother’s death.

    “She lived alone, we found that she kept a wooden box next to her phone with all the documents we needed,” he says. “Mom was still taking care of us.”

    You will also need to make decisions about key medical concerns. For example, do you want to be kept alive as long as possible, even if treatment causes great discomfort? Or do you prefer care that may allow you to enjoy better quality of life, though your death may come sooner?

    “Some people might worry that they’re not going to get enough treatment, while others might be afraid that they’ll get overly aggressive care,” says Kate DeBartolo, who directs the Conversation Project.

    Another crucial consideration: Who will speak for you if you are not able to voice your wishes? For many people, that may be a loved one, such as a family member, but it does not have to be.

    “I try to encourage my patients to think about who knows them best on their good days and bad days and who is readily available,” says palliative care doctor Christian Sinclair, MD, of the University of Kansas Health System in Kansas City.

    DeBartolo agrees: “I would love to expand the idea that it doesn’t have to be a traditional family member. Ask yourself: Who would you trust, and who do you think could really speak for you?”

    Such a person, known variously as a health care proxy or surrogate or agent, can be given power of attorney to make treatment decisions for you when you can’t make them for yourself. You also can –and should — put your wishes in writing. Legal documents, such as advance directives and living wills, are an alternative or may be used along with a proxy to make clear what you want.

    Sinclair, a co-author of the Institute of Medicine’s 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, says that over the last 15 years or so, conversations between patients and providers about end-of-life care have become more common as more doctors have been trained for such discussions.

    “Research shows that when these conversations happen and patients and clinicians are on the same page, there’s more likelihood that those patients will actually get the care that they want,” says Sinclair. “Having a good death is about making individual choices.”

    Complete Article HERE!

Emptiness and Filling Out Forms:

A Practical Approach to Death

Dying with compassion means having a plan in place for those left behind. A practitioner recounts how she navigated the process with her dharma friends.

By Rena Graham

As a Tibetan Buddhist practitioner, I am constantly reminded that we never know when death might approach, but for years, I’d avoided dealing with one of the most practical aspects of death—the paperwork. I was not alone: Roughly half of all adults in North America do not have a living will. Then recently, I suffered a near-fatal illness that left me viscerally aware of how unprepared for death I was, and I made a pledge with two of my friends to get ready to leave our bodies behind for both ourselves and the people who survive us.

Bridging the end of December 2017 and the beginning of January 2018, I spent a month in a Vancouver, British Columbia hospital with a bacterial lung infection that had also invaded my pleural cavity—the first time I’d come down with a severe illness. After ten days in an intensive-care unit, I was moved to a recovery ward where I suffered a relapse. I spent my 62nd birthday, Christmas, and New Years with strangers in the hospital.

One night in the ICU, while I was partly delirious and falling in and out of sleep, I had a vision of a deceased friend reaching out to me. From what felt like disengaged consciousness, I looked down at my body on the hospital bed and realized I wasn’t ready to die. I hadn’t studied my lama’s [teacher’s] bardo teachings to navigate the intermediate state between death and rebirth, and did not want to take that journey without a road map. It didn’t matter whether this was a drug-fueled hallucination or an actual near-death experience. The important thing is that I rejected death, not out of fear, but through a recognition of the dreamlike nature of reality. After this experience, I felt that my attachment to this life and the things in it had diminished. I no longer wanted to ignore what came next. I wanted to be prepared. 

When I told my friends Liv and Rosie about this vision, we agreed to study the bardo teachings together once I’d had a couple of months of recuperation. By March, however, our plans shifted. Rosie had heard about a man (I’ll call him Ben) who had died on Lasqueti Island, an off-the-grid enclave in Canada’s Southern Gulf Islands that a local cookbook once described as “somewhere between Dogpatch and Shangri-La.” He had left his closest friends without any instructions. They had no idea if he had a family or where they might be.

“And he left an old dog behind!” Rosie said, “Can you imagine?”

“Not the bodhisattva way to die,” I replied, referring to the Buddhist ideal of compassion. I  also imagined what mess I might have left, had I not made it. 

Promising they would never leave others in such a quandary, Ben’s closest friends created a document called the Good to Go Kit, which detailed information required for end-of-life paperwork. (It is now sold at the Lasqueti Saturday market to raise funds for their medical center.)

“I’ve been wanting to make a will for 20 years,” said Liv, who would soon turn 70, “but research throws me into information overload, which adds to the emotional overwhelm I feel just thinking about it.”

“What if we did this together instead of studying the bardo?” suggested Rosie, who was in her early 50s.

Writing a will, figuring out advanced healthcare directives, and noting our final wishes didn’t have the mystical lure of bardo teachings, but we set that aside for a year while we took on this more practical area of inquiry. 

To use our time wisely, we set several parameters in place. We decided to meet one weekend a month to allow time for research and reflection between meetings, and we chose to keep our group small for ease of scheduling and to allow us to delve deeper into each topic.

 “I’d like this to be structured,” said Liv, “so it doesn’t devolve into a social event.”  

Rosie and I agreed but we knew better than to believe there didn’t need to be some socializing. She offered her place for the first meeting and said she’d cook. 

“We’ll get our chit-chat out of the way over dinner,” she said. “Since we can all be a little intimidated by this process, we have to make it fun.”

Later in March at Rosie’s garden suite, we sat down to dinner and Liv passed out copies of “A Contemplation of Food and Nourishment,” which begins with the appropriate words: “All life forms eat and are eaten, give up their lives to nourish others.” The prayer was written by Lama Mark Webber, Liv and Rosie’s teacher in the Drikung Kagyu school. (I also study with Lama Mark, although my main teacher, Khenpo Sonam Tobgyal, is in the Nyingma lineage.)  Turning our meetings into sacred practice seemed the obvious container to keep us on topic.

After dinner, Rosie rang a bell, we said a refuge prayer and recited the traditional four immeasurables prayer to generate equanimity, love, compassion, and joy toward all sentient beings.  

We traded our prayers for notebooks and reviewed our Good to Go Kit. Rosie smiled at the expected question of pets—including the name of the person who would be caring for the pet, the veterinarian and whether money had been set aside for their expenses. The form also asked whether we had hidden items or buried treasure.

Liv laughed and said, “People still bury strongboxes in their backyards?”

My answer was more prosaic: “Storage lockers.”

Rosie, Liv, and I are all single and childless. We are all self-employed and independent and have chosen Canada as our adopted homeland, meaning we have no family here. So we considered what roles friends might play and focused on those who were closer geographically than sentimentally. 

Pulling them in to act on our behalf seemed like such a “big ask” as Rosie said, but it was time to get real about our needs. The three of us shared our feelings about involving friends outside the dharma versus those within. 

When I was in the ICU, my friend Diane visited on several occasions and later told me she remained calm until she reached her car, where she cried uncontrollably. In marked contrast, my dharma friend Emma calmly asked what I needed and didn’t make much of a fuss. My Buddhist friends tend to view death as a natural transition from one incarnation to the next, while other friends may see it in more dire terms: as a finality or even failure. For end-of-life situations, asking non-Buddhist friends for limited practical support seemed kinder for all involved. 

We started to familiarize ourselves with the responsibilities of someone granted power of attorney for legal and financial proxy and enduring power of attorney for healthcare. Months later, we agreed our network of “dharma sisters” would be the perfect fit. While we hope to maintain our ability to make decisions for ourselves, should we require long-term care, we felt the baton could be passed between a dozen or so trustworthy women. We have since spoken casually about this with a number of these women and have made plans to organize a get-together and discuss our plans in greater detail, offering reciprocal support for what the Buddhist author Sallie Tisdale calls “the immeasurable wonder and disaster of change.” 

We concluded our five hours together by dedicating the merit and reciting prayers of dedication and aspiration. Long-life prayers for our lamas were offered, a bell rung, and heads bowed. Without the need for further conversation, we made our way into the chilly spring evening, silently reflecting on our new endeavor.

The next meeting and those following included menus and discussions that varied widely. Our research grew monthly with documents from government agencies, legal and trust firms, and funeral homes. None of which felt specific to Buddhist practitioners, until Rosie told us about Life in Relation to Death: Second Edition by the late Tibetan teacher Chagdud Tulku Rinpoche. This small book is out of print, but I purchased a Kindle copy. In the introduction, Chagdud Tulku, a respected Vajrayana teacher and skilled physician, reminds us that “[t]here are many methods, extraordinary and ordinary, to prepare for the transformation of death.” A book of Buddhist “pith instruction,” it includes in its second edition appendices that above all I found most valuable. These include suggested forms for “Durable Power of Attorney for Health Care,” “Advance Directive for Health Care (Living Will),” “Miscellaneous Statements for Witnesses, Notary and Physician,” and “Letter of Instructions.” It even includes a wonderful note for adding your ashes to tza-tsas, small sacred images stamped out of clay. We loved that idea, though we couldn’t imagine asking friends to go to that extent to honor our passing. 

We decided to use a community-based notary public to draw up our wills, but with further research, Liv realized she could also hire them to act as her executor, rather than use her bank. She found someone experienced and enjoyed the more personable experience. In contrast, Rosie and I’ve decided to pay friends now that we’ve found ways to simplify that process for them. 

Memorial Societies are common in North America and help consumers obtain reasonably priced funeral arrangements. Pre-paying services at a recommended funeral home allows us to leave funds with them for executor expenses, should our assets be frozen in probate. End-of-life insurance “add-ons” we like include travel protection—should we die away from home—and a final document service to close accounts and handle time-consuming administrative tasks. 

In her book Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, Sallie Tisdale says, “Your body is the last object for which you can be responsible, and this wish may be the most personal one you ever make.” Traditionally in Tibetan Buddhism, the edict is to leave the body undisturbed for three days after death so your consciousness has time to disengage. Tisdale states that American law generally allows you to leave a body in place for at least 24 hours and that while a hospital might want to give you less time, you might be able to negotiate for more. 

We then turned to the thorny topic of organ donation, with Rosie and Liv both deciding against. Knowing someone would soon be taking a scalpel to your cadaver would not enhance the peaceful mind they hope to die with, while my view was just the opposite. Besides gaining merit through donation, that same scalpel image provides great motivation to leave the body quickly.

While reading Tisdale’s chapter titled “Bodies,” I began entertaining thoughts of a green burial, but after months of discussion, I ended up where we all started: with expedient cremations. Rosie wanted her ashes buried and a fragrant rose bush planted on top. Liv and I were more comfortable in the water and decided our ashes would best be left there, but not scattered to ride on the wind. We selected biodegradable urns imprinted with tiny footprints. Made of sand and vegetable gel, they dissolve in water within three days, leaving gentle waves to lap our remnants out to sea. 

By getting past the practical and emotional aspects surrounding death, Liv has found herself in a space of awe. 

“There’s a wow factor to dying that I can now embrace,” she said. 

Rosie no longer worries about who will care for her in later years. Without that insecurity, she’s left with a yearning to be as present for the dying process as possible. And I have found that my understanding of life’s importance as we reach toward enlightenment has been heightened. 

Our small sangha still meets monthly and is now studying bardo teachings in our ongoing attempt to create compassionate dying from compassionate living. As we have continued with our arrangements, we’ve reflected on what we gained from our meetings. We feel blessed for the profound level of intimacy and trust we now share. We have a deeper regard for other friendships and feel enveloped by an enhanced sense of community. And we all feel more cared for.

As Chagdud Tulku Rinpoche wrote in Life in Relation to Death: “Putting worldly affairs in order can be an important spiritual process. Writing a will enables us to look at our attachments and transform them into generosity.”

Complete Article HERE!