Tag: Advance Directives

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Sheltered At Home

Families Broach End-Of-Life Planning

By JoNel Aleccia

Long before she contracted COVID-19 at a Kirkland, Washington, nursing home, Barbara Dreyfuss made sure to document the wishes that would govern how she died.

The medical directive she signed last year at the Life Care Center outside Seattle called for no resuscitation if her heart stopped, no machine to help her breathe. The 75-year-old, who suffered from lung disease and heart problems, had been on a ventilator for two weeks in 2016, a grueling experience she didn’t want to repeat.

“Mom’s form said, ‘Do not resuscitate, allow natural death,’” said son Doug Briggs, 54. “That was her choice.”

So after Dreyfuss fell ill in late February, becoming one of the first U.S. patients sickened by the new coronavirus sweeping the globe, her family reluctantly allowed doctors to halt lifesaving treatment in favor of comfort care.

Dreyfuss, a once-vivacious feminist and activist, died March 1, two days before tests formally confirmed she had COVID-19. But her decision to confirm her wishes in advance could serve as an example for growing numbers of individuals and families feeling new urgency to pin down end-of-life preferences and plans.

In the weeks since the coronavirus has surged, sickening nearly 165,000 people in the U.S. and killing more than 3,000 as of Tuesday morning, interest in advance care planning has surged, too. More than 4,000 requests poured in during the week of March 15 for copies of “Five Wishes,” an advance directive planning tool created by the Tallahassee, Florida, nonprofit agency Aging with Dignity. That’s about a tenfold increase in normal volume, said Paul Malley, the group’s president.

“We started hearing from families that they want to be prepared.” said Malley, noting that more than 35 million copies of the living will were already in circulation.

Stephanie Anderson, executive director of Respecting Choices, a Wisconsin-based group that provides evidence-based tools for advance care planning, said her organization put together a free COVID-19 toolkit after seeing a spike in demand.

“We had hundreds of calls and emails saying, ‘We need help having these conversations now,’” she said.

The tools and documents aim to help adults of all ages plan for their medical, personal, emotional and spiritual care at the end of life with a series of thoughtful questions and guides.

Malley said the COVID-19 crisis has spurred interest from two primary groups. The first: people immediately concerned that they or someone they love will contract COVID-19.

“They’re saying, ‘Will we know what Mom or Dad wants?’” Malley said. “They’re motivated by the urgency of a health crisis around the corner.”

New requests also are coming from families sidelined at home by shelter-in-place orders, he said, as they spend relaxed time with loved ones and have more breathing room for such discussions.

“Their family is playing more board games together and catching up on movies,” he said. “Advance care planning is falling into that bucket of that thing people wanted to do when they had time.”

These conversations can be difficult enough during ordinary times, but the crisis has provided an urgent new reason to start talking, said Anderson. “We’re hearing people are really worried,” she said. “I’ve heard the word ‘terrified’ about what’s happening in the country.

It’s more than just filling out a document, Anderson emphasized. The conversations about preferences and values can help provide real relief. “They want somebody to talk about these things,” she added.

Eliciting end-of-life preferences in advance also could help ease the strain on the health care system as doctors grapple with how best to divvy up care amid dwindling medical supplies and equipment.

Dr. Matthew Wynia, a University of Colorado bioethicist and infectious disease doctor, is planning how to triage seriously ill patients when the supply of mechanical ventilators runs short at his medical campus. Understanding — and soliciting — patients’ end-of-life preferences are key, he said.

“We’ve always had the requirement that people get asked about an advance care plan, but now we are taking that incredibly seriously,” he said. “Because we need to know if you get much worse, what would you want?”

One new and potentially controversial question his hospital is considering would ask patients whether they’d be willing to forgo a lifesaving ventilator for someone else in a crisis. “Would you want to get in line for those crucial care resources?” Wynia said. “Or are you the kind of person who would say, ‘I’ve had a good life and I’ll let other people get ahead of me in line’?”

The most “ethically defensible” way to make a triage decision is to ask patients in advance, Wynia said. “By the time you’re asking for volunteers, these people can’t talk to you anymore.”

But some experts worry that asking such a question crosses a line, even during an emergency. Malley balked at the thought of asking COVID-19 patients to weigh their lives against others, fearing it could pressure vulnerable people — the elderly, disabled and others — into decisions they don’t really want.

“I think we shouldn’t resort to coercive questions,” he said. “I don’t think anyone should be made to feel they have a duty to die.”

Even if you’ve made advance care plans in the past, Malley and Wynia emphasized the need to reevaluate them in light of the COVID-19 scare. If you’ve documented your wishes to decline CPR or intubation because of a primary disease, such as cancer, consider whether you still want to forgo such treatment for the novel virus. Similarly, if you’ve opted for full treatment — prolonging life by all measures — make sure you’ve considered the potentially devastating aftermath of mechanical ventilation for COVID-19.

“For this condition, people who need to be on a vent for COVID-19 are staying on it for two weeks or three, and they may have very severe lung disease afterward,” Wynia said.

Indeed, Barbara Dreyfuss’ two-week stint on a ventilator shaped her answer to questions on the medical directive that guided her care, her son said. “Because of what had happened to Mom four years ago, we had already sat around as a family and discussed this,” Briggs said.

That doesn’t mean it was easy, said Meri Dreyfuss, 62, Barbara’s sister, who called stopping active treatment “a hellish decision.” But as the infection in her lungs worsened, Barbara Dreyfuss was clearly in pain. “I was like, ‘Oh, my God, I can’t stand the thought of her suffering,’” Meri Dreyfuss recalled.

Late on the evening of March 1, Briggs was with his mother in her isolation room. Nurses asked him to step out because he had exceeded the allowed contact time. But when he looked back, monitors showed that his mother’s vital signs were dropping fast.

Nurses allowed him to rush back into the room. Dressed in a hospital gown, mask and gloves, his cellphone wrapped in a plastic bag, Briggs quickly turned on the ’60s music his mother loved. Nurses had increased doses of drugs to decrease her air hunger and anxiety.

“Somewhere between ‘Stand by Me’ and ‘Here, There and Everywhere,’ my mom passed away,” he said.

At the center of a global crisis, Dreyfuss’ earlier decision allowed her to have control over how she died.

“It felt like she was peacefully sleeping,” Briggs said. “She just stopped.”

Complete Article ↪HERE↩!

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Do your loved ones a favor.

Find out now how they want to die.

I’m an ER doctor, and we need to know what matters most to your family member.

By Emily Aaronson

By now, most of us know the basics of getting through the coronavirus crisis: Wash your hands. Stay at home. Stay informed.

But there’s one other task we should all engage in now: Talk with a loved one about what they would need so that they can feel at peace at the end of life. It’s important that you understand what would be most important to them if they were in the last phase of their life — and what steps you and others will have to take to ensure those needs are met. These are conversations about hopes, but also about finances, decision-making and even about their more basic fears. These are conversations designed to guard against regrets.

There isn’t going to be a better time than now, when the periods in our days in which we can offer full, undivided attention are expanding. While social distancing at home, where you can be perfectly positioned on your couches or over FaceTime, with no appointments to run to, reservations to make or kids to pick up, this moment is perfect. Call your mother, or your brother or your daughter.

Of course, all of that is in addition to the other very real reason that having a careful conversation with the ones you love most about what matters most to them is important: In the days ahead, you may need to know the answers.

The most recent worst-case modeling from the Centers for Disease Control and Prevention paints a dire picture, predicting widespread transmission and asserting that most of the U.S. population will be exposed to the virus. Reports from Italy show us what care looks like when we can’t care for everyone, including the obligation to make hard decisions about who should receive the rationed resources. This doesn’t, of course, take into account all of the dramatic measures now in place. But there is no question that as illness spreads, lives will be lost. We hope that the demands on our health-care system won’t outstrip its capacities, but we also have to plan for the possibility that they might. Under those circumstances, getting your loved ones to clarify their wishes will have been an act of heroism.

The alternative is terrifying. As an ER doctor, I am already faced with patients who arrive too sick to tell me their wishes, with no documentation of what those were when they were well enough to articulate them and with family members who never asked and, as a result, just don’t know. It is in these situations, as I place tubes and lines in this failing body, that I worry we are not providing care that is concordant with their goals. If I had known that the 68-year-old with recently diagnosed metastatic breast cancer is more worried about being uncomfortable at the end of her life, rather than prolonging it, we wouldn’t have placed that breathing tube and would instead have focused our intensive efforts on making her comfortable. If I had known that the 81-year-old had always hoped to die at home, I would have spent more time trying to mobilize our home hospice team rather than defaulting to a hospital admission. If I had known that the most important thing to the 44-year-old was spending as many days as possible with his sons, I wouldn’t have subjected his wife to the extensive ER discussion about his goals and would instead have focused on giving her the emotional support she needed to prepare for the lengthy ICU hospitalization.

Ultimately, what we need to know in the hospital is what matters most to your family member. Among other things, how long would they want to receive medical care at the end of life? What concerns them about treatment? What are their preferences about where they would want to be if their time was short?

Before your family member gets here, however, there are other questions you will want to know the answers to, to better prepare yourself and them. What affairs do they need to get in order? Are there any family tensions or disagreements they worry about? How involved do they want to be in decisions about their care? If they couldn’t be, who would they like to make decisions for them?

I recently had this conversation with my own father and found out that he worried more about getting overly aggressive care than he did about not getting enough. He wanted me to be his health-care proxy rather than my mother, given my professional experience, and wants to be actively involved in any decisions about his care. Ultimately, he was clear that he would want to spend his last days at home, if my mom had the support she needed, rather than in a hospital.

These won’t be the answers for everyone. To help navigate the nuances of this conversation, the Conversation Project and Death Over Dinner are two collaborations among health-care professionals, community representatives and faith leaders that have created guides to help you move through these conversations. Regardless of which one you use, it’s important to recognize that it may take more than one discussion to leave you feeling prepared to speak with me, at the hospital, with confidence about what matters most to your loved one.

I wish we didn’t have to make and share these difficult decisions, but I worry that we are in a situation that necessitates it even more than usual. In this time of uncertainty, during which some of us have also been graced with a reprieve from the busyness of our external lives, I would ask that you join us at the front lines and — in support of the work that we all have ahead of us — have a conversation.

Complete Article ↪HERE↩!

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Pastors talk a lot about death around Easter.

Now covid-19 is forcing more to prepare for their own.

The Rev. Michael Curry is the presiding bishop of the Episcopal Church.

By Sarah Pulliam Bailey

The Rev. Barbara Brown Taylor will spend a portion of Good Friday planning her death. The Episcopal priest hopes to outline the music she would like to hear as her life comes to an end, the floral scent she hopes to smell and which of her 12 hand-pieced quilts she intends to hold.

Taylor is not ill, but at 68, she falls squarely into the age range especially vulnerable to covid-19. While the coronavirus has sickened people of every age, 80 percent of those who have died of covid-19 have been over 65.

So before Taylor speaks in virtual gatherings about the death and resurrection, she will add to her list of what she has already prepared: advanced care directives, who has power of attorney over her affairs, and plans to be buried — by her parents and sister.

“Few people are up for this conversation,” she said. “You won’t believe how many people walk away from me when I bring this up.”

Death is ever present in church sermons in the days and weeks that lead up to Easter. On Ash Wednesday, pastors remind parishioners, “Remember you are dust, and to dust you shall return.” On Good Friday, they preach the crucifixion of Jesus.

But even as many pastors lead funerals regularly, many admit they haven’t made end-of-life care decisions or planned for their funerals.

The Rev. Michael Curry, presiding bishop of the Episcopal Church, said he has planned his funeral, but covid-19 has pushed mortality to the forefront. He and his wife have had to make plans for what happens if they get sick with the coronavirus.

“Holy week is about hardship and suffering and death, that Jesus didn’t avoid it and dared to die … to show what love looks like,” said Curry, 67. “This is not a sweet sugarcoated Easter.”

Three weeks ago, a diagnosis for pneumonia prompted the Rev. Tony Evans, a popular megachurch pastor based in Dallas, to think about the details of his own funeral. (He tested negative for covid-19.)

“It’s always hard to hear about death but no better time to deal with it than when it’s staring us in the face right now,” said Evans, 71.

People used to imagine their own deaths more because they witnessed death more regularly, said Lydia Dugdale, director of the Columbia Center for Clinical Medical Ethics and a physician who has spent the past few weeks caring for covid-19 patients in New York City.

And although the church offers comfort to those dealing with the death of a loved one, Dugdale said it hasn’t been at the forefront of helping people face death. In her forthcoming book “The Lost Art of Dying,” she points to a 2013 Harvard University study found that clergy knew little about palliative and other end of life care. It found that pastoral zeal to encourage faith in God enabled congregants to choose treatments associated with more suffering.

Dugdale said laypeople haven’t wanted to hear about death, and clergy have stopped preaching about it. “From my own experience, I can count on one hand the number of sermons I’ve heard on the need to prepare well for death,” she said.

Covid-19 has changed that for some. The Rev. Carrie Call, who provides spiritual care to pastors and parishioners in the Penn Central Conference of the United Church of Christ, said more pastors have been seeking information on end-of-life care and do-not-resuscitate orders in the weeks leading up to Easter this year.

“It’s ironic, because our faith lives and message are about triumph over death and resurrection, but we come face to face with it on this kind of scale, it’s really challenging,” she said. “The challenge for pastors is how they cope with that in their own lives while maintaining a sense of calm to help parishioners in their lives.”

The Rev. James Martin, an editor at-large at America magazine, said he and his fellow Jesuits all have made funeral plans, including the readings, the celebrant and the music.

He said it’s human and natural to fear death, especially now. The way that people have died alone or been unable to hold funerals during the spread of the coronavirus has been especially sad. Still, some people might see it as an opportunity to change their lives.

“To plan out your own death is not always morbid,” said Martin, 59. “It’s a way to look at the kind of life you want to lead.”

Timothy Keller, the retired pastor of Redeemer Presbyterian Church in New York City, said he does not have his funeral planned. He said he thinks that should be up to his family. He has no burial plot, but he has his eye on a small graveyard in Manhattan surrounded by wire fence and car repair places, describing it as in the middle of things, unpretentious and easy to visit.

Keller said he is less afraid of death now at age 69 than when he was diagnosed with thyroid cancer at 52.

“If we got the virus and died, as sad as it would be, we would both say, ‘We thought we had more to do on earth,’ and it’s God’s way of saying ‘Nope,’ ” he said. “That’s not a bad message for God to say, ‘You’ve done your work.’ ”

Complete Article ↪HERE↩!

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Planning for death during a pandemic

By Dr. Ramy Salah

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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The Cure for What Ails Us

By L. S. Dugdale

A National Hospice Foundation survey some years ago found that Americans are more inclined to discuss safe sex and drugs with their children than they are to talk with their terminally ill parents about preparing for death. Although this may sound reasonable—unsafe sex and illicit drugs pose a threat more immediate than death—the consequences of avoiding talk of human finitude have been disastrous.

As a medical doctor, I have cared for countless patients who have approached life’s end without giving it much thought. Such patients often wind up dying highly medicalized deaths. They approach their graves having exhausted limitless technologies and therapies, including those unlikely to help. They don’t die the way that most of us hope for—at home, in bed, surrounded by family. And those they love are often left reeling from the experience.

With COVID-19 upon us, the threat of mortality is very real, even for the young. Yet preparing well for death is not what occupies the news. Instead, the conversation is focused on minimizing spread, treating disease, and amassing personal protective equipment—all necessary measures to safeguard public health. But the fallacy here is that all of these efforts are mobilized in opposition to death when the reality is that many will die—from the infection, its complications, or something else. Pandemic increases the odds of dying imminently, but mortality has always been 100 percent.

So what are we to do? Of course it is prudent to avoid crowds, wash hands, and call your doctor if you’re sick. But this is the domain of prevention, of thwarting death. These are short-term actions that we hope have long-term consequences. But they offer no cure for what ultimately ails us. They do not solve the problem of our mortality, nor do they provide the tools to prepare for it.

From the late Middle Ages until about a century ago, preparation for death was part of life. In order to die well, one had to live well, and this was worked out in communities over a lifetime. It wasn’t random or subjective. Rather, it was profound and coherent. Daily life itself was interwoven with the practices, rituals, catechisms, prayers, and beliefs concerned with preparing for death. Society today may have lost some of that coherence, but religious traditions continue to offer the tools for wrestling with human finitude, if we’re willing to consider them.

Will COVID-19 change the way we think about our mortality? It should. And it could start on a personal level. Do you know anyone of retirement age or anyone with a compromised immune system? Most of us do. What sorts of conversations have you had with them about human finitude?

When I ask this, people often counter that they don’t even know how to begin. Here’s a start: “Mom, Dad, if you caught the coronavirus and became so sick that you couldn’t make your own medical decisions, who would you want to make them for you?” Although this question is intended to establish a legal health care proxy, it leads naturally into questions about life support and end-of-life wishes. You can ask for their thoughts about “breathing tubes” and mechanical ventilators and whether they would want cardiopulmonary resuscitation or “CPR” if their hearts were to stop. You can rehearse the arguments against the efficient elimination of human life, against the misleadingly-named but increasingly vocal “death with dignity” movement. You can promise your presence. You won’t abandon them.

If this sounds too medical, numerous resources exist to assist the non-clinician. The founder of the nonprofit Aging with Dignity published a document called Five Wishes based on his work with Mother Teresa’s homes for the dying. Five Wishes gently guides the reader through five domains relating to decision-making authority, end-of-life wishes, comfort-related care, treatment with regard to personal matters, and how the dying wish to be remembered.

These sorts of discussions do much to mitigate dread of an isolated death in an anonymous intensive care unit. But their real value lies in their ability to pivot the conversation to what really matters, the so-called “big questions”—questions of human existence and of ultimacy. Why am I here? What is life for? What happens when I die?

Of course philosophers, priests, and rabbis have been wrestling with these topics for millennia. And they’ve written intelligently and persuasively about how to make sense of them. The work has been done; we don’t need to recreate it. But we do need to stop ignoring it. We must start to face our finitude and rehearse for death.

COVID-19 is giving us another chance.

Complete Article ↪HERE↩!

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With Dementia, More is Needed than a Boilerplate Advance Directive

By Katy Butler

My parents lived good lives and thought they’d prepared for good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance directives they’d signed at the urging of their elder lawyer. But after my father had a devastating stroke and descended into dementia, the documents offered my mother (his medical decision-maker) little guidance. Even though dementia is the nation’s most feared disease after cancer, the directive didn’t mention it. And even though millions of Americans have tiny internal life-sustaining devices like pacemakers, my mother was at sea when doctors asked her to authorize one for my father.

Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.

In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.

If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.

With that in mind, I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive. I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals. I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I’ve included it in my new book, The Art of Dying Well: A Practical Guide to a Good End of Life. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.

Dear Medical Advocate;

If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.

  • I wish to remove all barriers to a peaceful and timely death.
  • Please ask my medical team to provide Comfort Care Only.
  • Try to qualify me for hospice.
  • I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.
  • Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
  • Do not transport me to a hospital. I prefer to die in the place that has become my home.
  • Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
  • Do not treat my infections with antibiotics—give me painkillers instead.
  • Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
  • Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
  • If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
  • Do not force or coax me to eat.
  • Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal. 
  • Ask to stop, and do not give permission to start, dialysis. 
  • Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
  • Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
  • Do keep me out of physical pain, with opioids if necessary.
  • Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.
  • If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.

Complete Article ↪HERE↩!

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Living With Dying:

An interview with Syd Balows

By and

Our monthly column addresses the same set of questions regarding advance planning and end-of-life care to a variety of people in our community. Our intention is to generate discussion as well as collect information by exploring this one theme seen through multiple perspectives. Possibly we can develop a vision and next steps for our community!

This month’s interview is with Syd Balows who has lived at The Woods Retirement Community in Little River since 1999. He is active as a real estate broker selling homes only in The Woods. He is a charter member of the Death and Dying Group, which started in 2012 with 15 active members. In the Death and Dying group, there have been eight graduates and they all have received Gold Stars. Our current group ranges in age from 67 to 99 years old.

• In your experience in this community and your profession: What has been successfully advanced planning for?

Taking care of business! The 6 Ps says it all: Prior Planning Prevents Piss Poor Performance.

Our friend Sunny was also a founding member of the Death and Dying Group. She planned her dying process. She used VSED (Voluntary Stopping of Eating and Drinking). I spent time with her every day as she was going through the process of dying. Sunny had a list of 18 people she wanted to call and say goodbye to. I would dial the number and then hand the phone to Sunny. She would say, “Hi, I just called to say goodbye because I’m leaving this planet. You have always been such a kind friend to me.” Often times we were holding hands as the tears flowed as she was saying goodbye to her many friends.

Sunny made previous arrangements with a home funeral facilitator. Sunny had chosen to have a Celebration of Life party in her living room. Her cardboard casket was on a table awaiting decorations and wishes for a safe journey. She had a green burial in Caspar Cemetery.

When you make your own decisions you take the burden away from someone else. Be as detailed as you can be to avoid resentment with family members. Many siblings never talk to each other again because of resentments. Think clearly about what you give your beneficiaries. I have seen the men in the family get the business and the women get the furniture.

• What gaps do you see in advanced planning?

Honesty – being truthful about inheritance. If the dying elder changes their mind about who the family executor will be and doesn’t share that change with the family, the results can be a family breakup.

For example, David was told by his parental unit he would be the executor of their estate. The parental unit changed their minds about which sibling was going to be executor. They chose the oldest daughter, RN Ann, to be executor and daughter, RN Laura, to be co-executor. The parents signed all the right forms to make the change of executors but didn’t tell David that he was relieved of his duties. The elders didn’t want a conflict. He was really pissed!

Laura took care of Mom every weekend for four years. After Laura reached burnout, she asked Ann to become the new caregiver. Ann quit her job at the VA, moved out of her home into a suitable rental on the river and became the POA – power of attorney – for health care until the end of Mom’s life, four years later.

David and his sisters disagreed about whether they were to be paid caregivers for their parents, or if they were supposed to donate their time to the estate as co-executors. Because there was nothing spelled out in the legal documents that addressed these issues, it caused a family conflict.

• What have you seen work about end-of-life care?

Acceptance. Accept the things I can’t change. Change the things I can.

Community works. Like-minded people sharing space as we age “right on schedule.”

“Neighbors helping neighbors.” My dying group has had many graduates. We all got to help each other through the process and that has been great for our group. Get the paperwork done to say what you want it to say. “Say what you mean and mean what you say.”

• What gaps do you see in end of life care?

Our local medical system is not very dependable. The fate of the hospital and its chance of survival is having a huge impact on people moving here and people wanting to move away. We have a rural hospital that, to survive, must have an affiliation with a larger hospital group with deeper pockets. We need to have a Medicare-approved hospice, rather than our previous volunteer hospice. A Medicare hospice will serve the community better.

Real estate sales in The Woods in Little River has decreased because elders do not want to live in a community without medical service and a viable hospital. Election years are always bad for real estate.

Recruiting staff for the hospital is difficult for the same reasons that people do not want to commit to coming here if they do not know if their jobs are permanent. But people who live on the coast accept the fact that they will have less in the way of medical care than someone living in a city and plan accordingly. We know that we have to travel for care.

Elder financial abuse is rampant. I have heard of family caregivers removing jewels, a granddaughter set up a meth lab in an elder’s home, changed bank accounts into her name and brought in friends to live freely. There is no return of funds lost.

Many surviving spouses do not know how to deal with household finances. They need help or to have someone in charge to go through this phase. If the spouse who does know does not share the information, it is almost tragic because you have left that person paralyzed.

• Is there anything else you would like to add?

The aging process takes place every day and is frequently life-altering. It is a loss that you can no longer do today what you could do yesterday and that could be frightening. The quality of life is way more important to me than the quantity of life. Healthy aging requires acceptance of the reality of the living and dying process. Birth and death are the natural evolution of coming and going.

Death isn’t that bad a thing, because afterward there has never ever been even one single complaint.

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