Aid-In-Dying Loophole: Advocates Want You To Know You Can Stop Eating And Drinking

Lee J. Haywood/flickr

Lee J. Haywood/flickr

By Nell Lake
Guest contributor

One sunny day in the spring of 2012, Kathleen Klein sat in a car by the California coastline with her 84-year-old mother, Jackie Wilton. The two women had been quietly gazing at the view, watching seagulls along the shore. “I’m ready to go,” Klein recalls her mother saying. “Not go home…Go.”

Klein didn’t need the clarification. Her mother had been speaking of wanting to die for years, ever since Wilton was diagnosed with an unspecified dementia a few years before. Wilton’s memory had become significantly impaired. But even before her diagnosis, Wilton was clear: She wanted to die before she became severely incapacitated.

Not long after the conversation by the water, Wilton asked Klein explicitly for help in ending her life. In interviews and a recent blog post, Klein remembers wanting to help her mother, but of being unwilling act illegally.

Even if Wilton had lived in one of the five states with an aid-in-dying law, she would not have qualified for such aid from a physician. That would have required a doctor’s determining that she would likely die within six months. Given the usual course of chronic, progressive dementia, Wilton would likely have lived much longer.

So Wilton needed another option for ending her life. Soon Klein heard a radio interview about “the possibility of helping someone die by letting them stop eating and drinking,” she wrote. “The way I understood it, it was the only legal form of assisted suicide.”

Klein mentioned the scenario to her mother. Wilton said she would think about it. A few days later, Wilton again mentioned wanting to die. “I asked her if she remembered the idea I had run by her. She didn’t, so I told her again. I suggested we give it a try (a ‘dry run,’ we called it) for a day and see if she wanted to continue.”

Wilton began the “dry run” on April 28, 2012.

No Food, No Drink

Most often referred to as VSED — voluntary stopping of eating and drinking — the practice of giving up food and drink in order to hasten one’s death is being increasingly publicized by aid-in-dying advocates as a legal alternative to physician-assisted suicide.

VSED is legal everywhere, even in states without aid-in-dying laws, and in cases in which a person, like Wilton, would not qualify for assistance with dying even in those states.  Compassion and Choices, a leading “death with dignity” organization, is beginning to more actively promote VSED as an option because “it’s something that patients can openly pursue, in open dialogue with their physicians, with the support of hospice,” says Barbara Coombs Lee, the group’s director. “We do want to make it more public. We want to make it more visible because it upholds the truth that ultimately patients should be and are in charge. That’s kind of a consciousness-raising task. Continue reading

Heroism At Home: An Intimate Look At Growing Ranks Of Caregivers

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If you’re an adult living in the U.S., it’s a good bet that you (or your neighbor or close friend or colleague) are caring for an elderly family member. Indeed, more than 43 million Americans — about 18 percent of adults — care for a family member or friend 50 or older, according to the Family Caregiver Alliance; 15 million of these caregivers tend someone who has Alzheimer’s disease or some form of dementia.

Currently, family (read: unpaid) caregivers are the largest source of long-term care in the U.S. and health scholars expect that by 2050 the demand for such care will nearly double — and that family caregivers will have to continue meeting the greatest part of that need.

But the statistics don’t reveal the intimacy of such caregiving relationships: the terror of a mind slipping away, the humiliation and messiness of chronic illness, the often violent and shocking ways that bodies unravel. In her new book “The Caregivers: A Support Group’s Stories of Slow Loss, Courage And Love,” journalist Nell Lake details her two years observing a caregivers support group that includes a 50-year-old botanist who moved in with her aging mother to care for her, and a survivor of Nazi Germany who devotedly tends to his ailing wife, and others in the group (some of whom are dealing with serious health problems of their own). While documenting their lives, Lake offers views into the complexities of caregiving: the profound stress, the upheaval of family roles, the slow, often excruciating grief, as well as the graceful humanity of it all.

Here, lightly edited, is my Q & A with Lake, who lives with her family in Northampton, Mass.

RZ: You begin your book on a personal note, with a memory of your grandmother. Can you tell us a bit about her and how her story moved you to write about the larger issue of caregiving in America?

Journalist and author Nell Lake (photo: Sarah Prall)

Journalist and author Nell Lake (Courtesy Sarah Prall)

NL: My grandmother was a poised woman who lived her life with great energy. She had raised three children, kept a beautiful home, was active physically and also politically—involved in environmental causes and in the nuclear freeze movement in her community. She prized her independence and physical vitality, and, as she aged, she expressed a fear of ending up frail and in a nursing home. She kept materials from the Hemlock Society in a kitchen drawer.

In the summer of 1984, when I was 18, she found out from a doctor that she might have cancer. That night, she went to her garage, sat in her car, and turned it on. A neighbor found her the next day.

While my grandmother’s suicide didn’t directly spur me to pursue a story about long-term care and family caregiving, once I was sitting in on the caregivers support group, it was clear to me that I was immersing myself in the stage of life, an experience, that my grandmother had feared and successfully avoided. It became especially moving, then, for me to follow others who were making their way through the “shadow part of life,” as I put it in the book.

My memories of her shaped my lens: I wondered, Can we find ways to embrace this part of life, to meet it with less fear? Can we also try to make it better for everyone?

How did you connect with the hospital caregiver support group?

In late 2009, I went to a dinner party, a birthday celebration for a friend. I ended up seated next to a man whom I call Ben in the book. He told me that he was the lead behavioral health counselor at our local hospital, and that he also facilitated a weekly support group there for family caregivers. I told him I was a journalist interested in healthcare and mental health issues. He suggested I might want to sit in on the group, and later he asked the group members’ permissions. Before long I was listening to their stories.

Is there any particular quality you discovered about these caregivers that you didn’t expect?

It may sound surprising, but spending two years with the support group gave me a new and better sense for what constitutes heroism. I saw heroism in Penny, who had taken her forgetful mother, Mary, into her home. Caring for Mary was not easy, but Penny met Mary’s needs as best she could, sought to provide her mother with as much comfort, care, and happiness as seemed possible. I saw heroism, too, in Daniel, a caregiver who was himself quite frail, and whose wife was bipolar and in pain. Daniel also bravely did his best to meet his wife’s needs.

Their heroism, to me, was a willingness to keep returning to difficult circumstances, to persevere and act compassionately, to try to ease others’ suffering.

This idea of heroism is similar to the notion that bravery is not the quality of being free from fear; rather, bravery is a willingness to act in spite of fear.

Some (many?) caregivers are reluctant to take on so much responsibility, but feel they have no choice. Is this true for most informal caregivers these days and how does our modern notion of caregiving differ from past generations?

In the most important sense, there was less choice a century ago. The word “caregiver” didn’t exist; the words “daughter” or “wife” or “sister” sufficed to describe a caregiving role. Continue reading

Why To Exercise Today: Preserve Your Brain, Avoid Dementia

Shreyans Bhansali/flickr

Shreyans Bhansali/flickr

It’s raw and miserable out, with snow on the way: a perfect day for a long, sit-down lunch, or just hunkering down to work at home with a laptop, a warm cocoa and a soft couch. Right? No, no and absolutely no.

A new study that followed men in South Wales for 35 years puts numbers on what now should be obvious to us all: exercise is one of the most powerful tools you possess to help prevent dementia and cognitive decline in older age. So get up now and go sweat.

To me, the most eye-popping finding here is that by following a fairly simple health regimen, the chances of a “disease-free” life as you age increase dramatically:

Researchers report that people who consistently stuck to four or five “healthy behaviors” (regular exercise, no-smoking, a low bodyweight, a healthy diet and low alcohol intake) “experienced a 60 percent decline in dementia and cognitive decline – with exercise being the strongest mitigating factor – as well as 70 percent fewer instances of diabetes, heart disease and stroke, compared with people who followed none.”

More from the news release:

“The size of reduction in the instance of disease owing to these simple healthy steps has really amazed us and is of enormous importance in an aging population,” said Principle Investigator Professor Peter Elwood from Cardiff University’s School of Medicine. “What the research shows is that following a healthy lifestyle confers surprisingly large benefits to health – healthy behaviours have a far more beneficial effect than any medical treatment or preventative procedure.

“Taking up and following a healthy lifestyle is however the responsibility of the individual him or herself. Sadly, the evidence from this study shows that very few people follow a fully healthy lifestyle. Furthermore, our findings reveal that while the number of people who smoke has gone down since the study started, the number of people leading a fully healthy lifestyle has not changed,” he added.

Recent surveys indicate that less than one per cent of people in Wales follow a completely healthy lifestyle, based on the five recommended behaviours, and that five per cent of the population follow none of the healthy behaviours; roughly equating to a city with a population the size of Swansea (240,000).

Professor Elwood continued: “If the men had been urged to adopt just one additional healthy behaviour at the start of the study 35 years ago, and if only half of them complied, then during the ensuing 35 years there would have been a 13 per cent reduction in dementia, a 12 per cent drop in diabetes, six per cent less vascular disease and a five per cent reduction in deaths.” Continue reading

Forgive. And Other Caregiving Lessons From My Mother’s Dementia

elderly hands
Here’s a striking statistic: Four in 10 American adults care for an ailing or elderly family member, according to a study released this week by the Pew Research Center’s Internet and American Life project. The numbers have been rising as the population ages and more people live with chronic illnesses, and that rise is expected to continue. Here, non-profit CEO Tiziana Dearing shares her own family’s newly learned caregiving lessons.

By Tiziana Dearing
Guest contributor

My mother has dementia and is degenerating. I struggle to find the words to describe how hard that is. Then again, if you have a loved one suffering severe dementia, I don’t need to tell you what it’s like. And if you don’t, I don’t think I could.

Last weekend, my sisters and I convened at my parents’ home to discuss how to support Mom and Dad through this difficult transition. We shared our feelings, our concerns, and the things we have learned so far – both from supporting Mom and through advice from close friends and colleagues who have had similar experiences.

On the trip home, I realized that if we found all these lessons and advice useful, other people might, too. So for those of you struggling, here’s what I would share with you so far.

First, I am so sorry that you and your loved one find yourselves here. Not every moment is bad, though. Find the moments that give you joy and share them. Out loud. You’ll get to live them twice that way and they will help sustain you.

If caring for a loved one with dementia were easy, there wouldn’t be an entire industry built around it.

Second, not all dementia is the same. For example, frontotemporal dementia, the type my mother has, can cause personality change that is not typical in Alzheimer’s disease. Make sure you know what form of dementia your loved one has, and learn what it really will mean for him or her.

Those directly involved in providing care for someone probably have this information, but maybe not. And if you are that brother, sister or in-law who is only partially involved, I am especially talking to you. It can be hard to face the details, especially things like symptoms to anticipate and impact on life expectancy. Nevertheless, you need – and want – to know. As the disease progresses, you can’t imagine how helpful it is to know what’s “normal” for your loved one and what truly is unexpected or might be a symptom of something else.

Third, you can ask for a family meeting. Continue reading

My Father’s End-Of-Life Treatment: Not What He Had In Mind

(Earlier this month, we ran a piece about dangerous “transitions” in health care, that is, shuttling older, often frail and vulnerable patients in and out of hospitals and rehab centers even as their health continued to deteriorate. The piece prompted Sarah Stephens of Boston to send us a truly eloquent note about her 98-year-old father’s painful transitions at the end of his life. We asked Sarah to expand her comments, and here is her story.)

By Sarah A. Stephens

My father, Ernest F. Acheson, died in his 99th year, seven months after the death of my mother, Sally C. Acheson. Both my parents had made it clear to their children from early in their middle age that they did not want “heroic” measures adopted if they were incapacitated by accident or grim diagnosis. Their legally signed and verified “End of Life Directives” had been part of their medical records for years. These forms were comprehensive and specific; no amount of interpretation could justify the implementation of measures to prolong life after their mental and physical capacities failed. What eventually happened to my father, therefore, seemed to my sister and me ironic as well as tragic.

April 4, 2010, Oqunquit, Maine. Nine months before his death, Ernest F. Acheson holds Oisin Stephens, a great-grandson

In 2010, he had been suffering from a form of senile dementia progressively for at least 10 years, though his physical health was excellent. The death of his wife, however, in May of that year, caused him greater confusion and anxiety than he had ever experienced. Because he couldn’t remember anything, the only fact that stayed with him was a sense that something was wrong, terribly wrong, and he was very sad. Most of the time he didn’t even realize what/who it was that he missed, but sometimes he would ask, “Where is Sally?” His isolation – from the world, from himself – became increasingly apparent, as did his distress.

Early in the morning on December 7, 2010 the staff at the assisted living facility, where he lived in Maine, found him on the floor. They phoned an ambulance and he was taken to a nearby hospital, where a left hip fracture was diagnosed. Continue reading

Why To Exercise Today: Don’t Get Stupider

Forgive the headline. “Stupid” is a harsh word, though it’s the best descriptor for how I sometimes feel. Rather, shall we say, let us avoid cognitive decline, including dementia.

Two new studies are just out showing that exercise lowers the rate of cognitive impairment in older people. One possible explanation: The brain’s decline can be connected to problems with blood supply, and exercise is good for the cardiovascular system.

From the press release:

CHICAGO – Engaging in regular physical activity is associated with less decline in cognitive function in older adults, according to two studies published Online First by Archives of Internal Medicine, one of the JAMA/Archivesjournals. The articles are being released on July 19 to coincide with the International Conference on Alzheimer’s Disease in Paris and will be included in the July 25 print edition.

According to background information provided in the articles, previous research has suggested that physical activity is associated with reduced rates of cognitive impairment in older adults. However, much of this research has apparently been conducted among individuals who are generally in good health. Further, many of these studies rely on self-reports of physical activity, which are not always accurate; and focus on moderate or vigorous exercise, instead of low-intensity physical activity. The two articles being presented today seek to fill in these gaps in the research. Continue reading