Choosing How to Live and How to Die
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.”
“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.”
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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.”
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It’s a conversation nobody really wants to have because it’s about a subject none of us wants to face…
It’s important, nevertheless, to talk to people close to us about death and dying, so that when the time does come we know what their wishes are and how best to support them.
Also, telling family members what you want when it comes to that end-stage of life can make a difficult time easier for them.
Funeral directors constantly see families grappling with grief and having to make decisions when a special person to us has passed, and say having had “that conversation” can take away some of the pressure.
Dean Maxted, assistant manager at H Morris in Northcote, Auckland, says it not only helps with the logistics of organising a funeral, but also opens the door to getting people talking about matters that are important and have perhaps been left unsaid.
“Talking about personal preferences and what you would like when it comes to your funeral can be a really good conversation starter to all sorts of other big stuff,” says Dean. “It can lead to really valuable discussions that you might not have had otherwise.”
In some cases, it can help people come to terms with facing the inevitable and it can also strengthen bonds or mend fences. It may also be a chance to let go of long-held secrets that can weigh someone down.
And whether you’re having the conversation with someone living with a terminal illness or the subject has been raised because you know it is something that will have to be dealt with one day, it is important to pay attention to what the other person has to say.
“Death and dying is not a rational topic and people don’t always react how you think they will,” says Dean, who has seen people respond to facing death and the loss of someone they care about in just about every way possible during his years in the funeral business.
Then there are the huge range of emotions people can experience when they’re faced with dying. These include fear of what will happen and anger that their lives are being cut short, through to disappointment that they have not achieved what they wanted to. Some people are so worn down by illness and old age that they can’t wait to go. Others are very grateful for the care they’ve had and feel satisfied with their lot.
“No matter how they are feeling, the important thing is that you are talking about what they are going through and that they know they matter enough for someone to listen to them,” says Dean. “Taking that on board is as generous a thing as you can do for anyone.”
Tips on having a conversation about a tough subject
• Be sensitive to the needs of the other person. Raise the subject at an appropriate time and don’t be pushy if they don’t want to talk about it.
• If you find it difficult to handle having the conversation yourself, maybe there is someone else who can do it instead, for example a relative or friend, a minister or pastoral carer, or a counsellor.
• Write down their wishes. This is not only helpful for later on, but also shows that they are being listened to.
• Be respectful and calm.
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who will make final decisions in the future?
By Angela Y. Lee
With an aging, childless future, who’s going to take care of us when we get old? Who’s going to make those end-of-life decisions for us when we can no longer decide for ourselves?
A recent global report from Axios, “The Aging Childless Future,” shows that in the U.S., a fertility rate below the “replacement rate,” according to the Centers for Disease Control, occurs at the same time as the rise in global life expectancy. In 2015, the global life expectancy of about 70 years old will rise to 83 years old in 2100, according to U.N. data.
The report states, “Except in Africa, by 2050 about a quarter of the world population will be 60 or older. At about 900 million now, their numbers will rise to about 3.2 billion in 2100. By 2080, those 65 or older will be 29.1 percent of the global population — and 12.7 percent will be 80 or over, Eurostat reports.
A troubling takeaway from the report is that there simply will not be enough workers to support the elderly, In the U.S., there are fewer than four workers per retired person. In seven European countries, there are three and in Japan, there are two workers per retired person.
The implications of this population shift affect public policy, health care, elder care, end of life decisions, the overall economy and every family in America and across the world.
I understand this firsthand. My mother is 96 years old and has Alzheimer’s. Two months ago she suffered a massive stroke and was in a coma for two weeks. Her heart rate slowed down to the 50s and 60s; her blood pressure dropped to 70/44. Her body was not ingesting the food she was fed through a feeding tube.
My siblings and I decided to remove the tube to make her feel more comfortable. We were preparing for her departure; and the priest (who was a former student of hers) came to administer the Annointing of the Sick. And one of us was always there with her.
Gradually her heartbeat got stronger, her blood pressure started to climb and she was able to breathe without the support of the ventilator.
The doctors’ prognosis was bleak — our mother would inevitably get pneumonia, or some infection. We had discussed and all agreed that we would not want to prolong her suffering. So no resuscitation, no reattaching to the ventilator and no antibiotics.
What about the feeding tube? One option was not to reintroduce nutrients through the feeding tube and essentially let her waste away. The other option was to reintroduce nutrients and wait for some infection to happen (which according to the doctors was just a matter of time). Starving mother to death might be a more humane decision, but it was immediately rejected by my sister who is a Buddhist. She thought our mother wanted to live and we should honor her wish and give her a chance.
Mother did not have a living will. We were all trying to make a decision on her behalf — based on what we thought she wanted, based on what we thought was best and on what we personally would like to happen if we were in her situation.
Our mother had on occasions before the stroke complained that she was bored and life was not worth living. But that didn’t necessarily mean that she wanted to die. Her complaint could be her way of telling us that she wanted us to visit more often.
Families all across the globe are faced with similar scenarios. In a future where perhaps children are not there to facilitate these decisions, how will these life and death decisions be decided and by whom? Leaving these decisions to chance, or to administrators, health-care workers and other strangers is a frightening possibility.
Everyone should have a living will — in order to depart this world with dignity, free from prolonged pain and suffering. However, an end-of-life decision made as young and healthy people may not be the same end-of-life decision when older, weaker and perhaps unable to communicate.
Research in affect forecasting — or the ability to accurately predict future emotions– has consistently shown that people are reliably inaccurate in predicting how they would feel in different situations
In one study, younger participants with a mean age of 25.5 years and older adults with a mean age of 74.3 years have been shown to make different predictions about how they would feel if they win or lose money.
Older adults reported feeling less negative than younger adults when they lost money. Who is to say that end-of-life decisions made when we are young are the right decisions for us when we are old?
My own research has shown that when people are cognitively depleted or physically tired, they feel more vulnerable and are more likely to engage in self-protection. Across different studies, depleted participants reported being less likely to engage in risky behaviors such as having unprotected sex and more likely to engage in risk-reduction behaviors such as getting tested for kidney diseases and chlamydia.
When people are not able to think properly or reason logically, they revert to relying on instincts. And the survival or self-preservation instinct is a very strong instinct. So if we are trying to make an important end-of-life decision for ourselves when we can still think properly by anticipating what we would want when we could no longer think properly, we may be off the mark.
If our mother’s will to live is what enabled her to come out of the coma and get off the ventilator, then withholding nutrients and let her waste away is equivalent to murdering her.
Many people have a will, a legal document that specifies the distribution of one’s assets after death. People change their will as circumstances change and they re-decide who should inherit how much of their assets.
People should also have a living will, a document that allows people to state their wishes for end-of-life medical care, in the event they become unable to express their decision. Health-care providers are usually the ones to suggest or remind patients to have a living will.
But more than just having a living will may be the best practice. Given the frequency of poor performance on affect forecasting and given that perspectives and sentiments often change as we age, perhaps perhaps there needs to be a system in place to prompt regularly revisiting the terms of the living will.
Our mother is in a hospice/rehab facility. She takes pleasure in the daily visits and phone calls of her five children. We are doing our best.
Everyone needs to learn more about end-of-life experiences in order to make better end-of-life decisions for ourselves and for our loved ones.
Perhaps there can be a public policy on not just who has the legal authority to make end-of-life decisions, but also with guidance on how to make these decisions.
In the not too distant future, for people who are childless, these decisions are best not left to chance.
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How can we break the silence about what happens when we’re dying?
I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”
I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.
As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)
So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.
My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.
The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.
This cannot be right. This cannot be what we want for our parents—or ourselves.
Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.
“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”
For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.
Talking about death
The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?
Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.
“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”
Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.
It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.
“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”
It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.
“I don’t think euthanasia matters,” Saul says. “I think it’s a sideshow.”
While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.
McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.
“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”
This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.
“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”
Death with dignity
I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.
Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.
Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.
The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.
Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.
Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.
Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?
If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.
My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.
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Sometimes death comes like a thief in the night. Other times, there’s a slow and clear buildup. In the latter scenario, one of the benefits – if you can even call it that – is that you have time to prepare for the end of your life.
By Larry Alton
Preparing for Your Final Chapter
At some point, it may become clear that whatever healthcare, treatments, medication, or procedures you’re pursuing to prolong your life are no longer effective. You may also come to realize that they’re doing more harm than good – robbing you of the opportunity to enjoy what time is left. When these revelations become clear, the best thing you can do is stop and focus on your quality of life.
As sobering as it is to accept, you will eventually pass on. And either you pass on without any purpose or plan – leaving the burden to your loved ones – or you can take the time to prepare for the end of your life and, in the process, provide a greater sense of closure for everyone involved.
Everyone’s end of life care situation will be different, but here are some suggestions to help you approach this sensitive and emotional time with poise:
1. Have Important Conversations
The first step is to have the right conversations with the right people. When you decide to stop seeking treatment or pursuing certain healthcare options that are designed to extend your life, it’s important that people know.
Your family needs to know that you’re dying – not so that they can feel sorry for you, but so that they may process it in a healthy manner. These conversations are more for your loved ones than they are for you. Set aside some time to speak with parents, siblings, grandchildren, close friends, mentors, etc. You don’t have to be overly sentimental or wise – just be yourself. Honesty will go a long way.
2. Make Your Wishes Known
Now’s the time to make your wishes known. If you’re currently in a nursing home, hospital, or another care facility, it may be wise to move back home. This will lessen your chances of receiving poor care from a staff that may neglect certain important needs. Instead, you can receive personalized care from your loved ones (who are more likely to respect your wishes).
If you haven’t already done so, now’s also a good time to designate a trusted loved one to make medical decisions on your behalf.
“This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made and who can most easily stand at your bedside, if necessary,” patient advocate Trisha Torrey writes. “Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, experience another debilitating event, and can’t speak. In addition to your primary representative, you’ll want to designate who your second choice representative should be.”
If there are specific details that are important to you, make these clear as well. For example, some people only want certain individuals present when the time comes for them to die. Other people don’t care. Speak your mind now so that you have the chance to die on your terms.
3. Get Financial Matters in Order
Hopefully you already have a last will and testament drafted. If you don’t, go ahead and do so. This will allow you to direct your finances and assets to the right people. It also saves your heirs from having to deal with the legal fallout of an estate that hasn’t been properly accounted for.
4. Secure the Right Burial Arrangements
Finally, be sure that you establish and document your burial arrangements prior to your passing. This is one less thing your family has to worry about. It gives them the opportunity to grieve properly, rather than hurrying around to figure out administrative details.
Leaving With Grace and Dignity
You will leave a legacy when you die. Whether this legacy is positive or negative remains to be seen. By preparing for the end of your life with purpose and dignity, you’ll increase the chances of passing on a legacy that people are happy to attach themselves to. Take some time to think about your wishes and how they can be executed tastefully.
Complete Article ↪HERE↩!
By Glenn Ellis
The entire lifespan of most African Americans is consumed by efforts to overcome obstacles, inequality, and in many cases, institutional racism.
The most difficult point in this most tiring journey is often the end-of-life. For the disproportionate number of us is when death is accompanied by the dilemmas around how we choose to die.
Hospice; Palliative Care; Advance Directives; and Compet-ency become terms that we, or our loved ones, all of a sudden are faced with and expected to deal with.
Studies and observations show that, likewise disproportionately, we are not prepared for this final stage of life.
What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive.
First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.
An Advanced Directive includes things that typically are not even thought about during times when life is good.
Generally, it will include things such as a living will or do-not-resuscitate order, or in identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; Hospice Center; or even on Home Hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.
In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.
If you are not competent, or capable, to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.
In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that doctors and others on the care team of a terminally-ill patient may decide to continue providing care and treatment, when you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity. In the absence of an Advance Directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an Advance Directive in place.
It can be a difficult, and often, an uncomfortable conversation, but collectively, we have to begin to have conversations during the “good” times in life with our families and loved ones about what we do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.
Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.
A few things that may be helpful for you in getting an Advance Directive for yourself:
First you need to familiarize yourself with the term: life-sustaining treatments. Nolo’s Plain-English Law Dictionary defines this as “Medical procedures that would only prolong the process of dying or sustain a condition of permanent unconsciousness. A patient who is receiving life-sustaining treatment will die soon, whether or not treatment is administered. Life-sustaining treatment may include a respirator, cardiopulmonary resuscitation (CPR), dialysis, surgery, and other medical procedures.” Would you want any of these? If so, under what circumstances?
Most importantly, let your loved ones know what you have in your Advance Directive. People only like surprises for their birthdays. Don’t wait for them to find out at an emotionally difficult time, when they are grappling with the inevitability of your death.
You don’t need a lawyer to create your Advance Directive. But you do need to make sure you understand the laws of the state you live in regarding Advance Directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.
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