The Buie Knife

Two 'Good Deaths': The Kennedys, Ted and Eunice, Teach Us How to Die

August 2009 has brought two high-profile deaths from the same family -- Eunice Kennedy Shriver and her brother, Senator Edward Kennedy. Somewhat surprisingly, these two hard-chargers help to teach us what a good death is. Senator Kennedy planned "a good ending for myself," according to The New York Times, as it described his last days. He wrote a letter of confession, summing up his strengths and weaknesses, to Pope Benedict, and received a reply of  blessing from the Pope. Father Patrick Tarrant described Senator Kennedy's last moments, at peace, at home surrounded by loved ones, in this video.

"The last months of my dad's life were not sad or terrifying, but full -- filled with profound experiences, a series of moments more precious than I could have imagined," said Ted Kennedy Jr. "He taught me more about humility, vulnerability and courage than he had taught me in my whole life."

Maria Shriver, in her remarkable eulogy to her mother, described Eunice's last weeks and months: "She who never sat still was forced to confront stillness, and it was hard for her, but she never complained and she never asked for pity. She fought, and she fought, and she fought, right up until her very last breath....As she sat still, she taught me how important that is in one's life. She taught us that real strength can also be found in real vulnerability, and that it's OK -- even important -- to lean on those who love you. Now if you had told me a few years ago that at the end of my mother's life she and I would sit in a room and just be, I would have said you were crazy. If you had told me that at the age of 52, I would finally get up the nerve to crawl into bed with my mother, hold her, and tell her that I love her, I would have said you were nuts. And if you had told me that Mummy and I would write poetry together, I would know for sure you that you'd lost your mind. But all those things really happened, as Mummy learned to let go. At the end of her life, she was strong and vulnerable, she was tired and tireless, determined and also ready to surrender to God."

Related:

• Time.com: The Lessons Ted Kennedy Taught At Death
• Ann Hulbert explores "What Ted Kennedy's end-of-life choices may say about health care reform."

The Grim Reaper As Life Coach

Suddenly, mass media and popular culture seem to be preoccupied with death and dying. James Wolcott writes a clever, humorous and poignant review of numerous recent books on mortality. "The baby-boomers—newly aware of their mortality—have turned death into a teaching moment (Tuesdays with Morrie), motivational tool (The Last Lecture), and sales pitch (all those bucket-list books of things to do before you go). It’s the Grim Reaper as life coach," he writes in Vanity Fair.

New York Times writer Jane Brody is getting a lot of attention for her "Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life," including a discussion on NPR's Diane Rehm Show.  

Meghan O'Rourke in Slate has a series, written in real time and posted after the fact, on "what grief is really like" called "The Long Goodbye" about coming to terms with the death of her mother at the relatively young age of 55. She naturally feels robbed of 20 years or more of life with her mother. What she describes is partly the normal process of grieving. Most of us probably feel that way after someone we love dies.

And yet, thinking of my own mother's death, I feel particularly blessed. She had lived a long life, to age

Reflections on Year's End, Winter Mortality, Reason for Writing, Blogging

It's almost year's end, and I know of two people in their 80s on their death beds who aren't likely to make it into 2008. I wonder if more people die in late December than at any other time of the year? If in poor health, enduring pain and a long illness, one can certainly understand that the will to live into another year would diminish if not shut down at this time of year. I've tried to find a Google link to research that confirms my hunch that the mortality rate is higher in late December than at any other time of the year, but the best I can find is a study from Auburn University in Alabama indicating that more people die in winter months. 

While searching for that data on the Docuticker.com web site, I did find a study by Scarborough Research asserting that 15 percent of the adults in Austin, TX are bloggers, 14 percent of Portland, OR adults are bloggers, and 13 percent of San Francisco adults are bloggers. Nationally, eight percent of all consumers are bloggers, according to this study. Kind of amazing, isn't it? I wonder if it's really true. How do they define "blogger"? If you set up a blog a year ago but haven't posted since, are you a blogger? If you post twice a year, are you a blogger? If you post comments to someone else's blog, are you a blogger? Certainly, Ron Moore, with his very frequent comments on my blog, is a blogger. But would the study count him? Anyway, it's encouraging to me that so many people are taking to writing, and reading blogs.

Is it a good use of time? This time of year is a time for taking stock. The passing away of friends and acquaintances over the last year lead one to reflect on how to choose to spend whatever remaining time we have left. Obviously, none of us knows how much time that will be. Should I continue in 2008 to spend time blogging, or should I get more of a life off of the computer? My last post mentioned the kidding I've received from my extended family for spending time blogging. And it's true one shouldn't take blogging, especially if done in isolation, too seriously, or spend too much time on it, especially if what you produce is the drek and garbage found on a lot of blogs.

Debra (writemyline) made a great point in the comments about the value of blogging. I liken it to providing the discipline for a combination of journal-keeping, letter-writing, research, debate (sharpening my own thinking), and often inspiring the first draft of columns or articles I write for publications. And connecting you and me to a world community that shares some of the same interests, concerns and values.

One powerful reason to write, if not blog, comes from a popular blog called "37 Days: What Would You Be Doing If You Only Had 37 Days Left to Live?"  Why 37 day?   

Maxine's Living Will

Hat Tip to The Fat Lady Sings web site:

To Whom It May Concern

I, being of sound mind and body, do not wish to be kept alive indefinitely by artificial means.

Under no circumstances should my fate be put in the hands of peckerhead politicians who couldn't pass ninth-grade biology if their lives depended on it.

If a reasonable amount of time passes and I fail to sit up and ask for a piece of chocolate, it should be presumed

Art Buchwald's Dispatches From Hospice: Having a Wonderful Time, Wish You Were Here

Long ago I observed a surprising amount of humor in a hospice. Now columnist Art Buchwald, still writing his newspaper column at past 80 years old from his hospice bed, is illustrating the point once again, accepting death as one might be privileged to accept it, after a long life, and a successful career of making people laugh. Waiting for death, he dreams of taking a flight from Dulles Airport to heaven. "Who Art (Not Quite) in Heaven" is the clever headline. Previous columns include observations about feeling depressed: "Mike Wallace, Bill Styron and I all had depressions at about the same time. We lecture about it and call ourselves "The Blues Brothers," he quips.

Then there's his fantasy of donating to a sperm bank (at 80) to achieve a kind of immortality; and how much fun it is in hospice -- he was supposed to die three weeks ago, he said, but he's still here and "having a swell time." (Hat Tip to Joel Achenbach's blog for linking to Buchwald's latest column. There are, btw, some great comments there.)

Related:

• End-of-Life Care: For several years, I worked on the Robert Wood Johnson Foundation's Last Acts Campaign to Improve End-of-Life Care. In the "end of life" section of this blog, you'll find several of my articles.

What Life Is Likely To Be Like Toward the End

Imagine life as it is likely to be toward the end. You're a bright person, but a shadow of your former self. Dementia, Alzheimer's, or a stroke have left you confused, asking the same questions over and and over, unable to absorb or comprehend the answers. You've always loved to read, and out of habit you spend a good part of the day reading, or watching television, but you can't remember what you've read or what you've watched. Internal plumbing problems occupy a good portion of your day. You have round-the-clock nurses who give you pills at the appointed hour, take you to the bathroom, feed you. You're gradually losing control of your faculties.

Is there anything we can do in middle age to avoid this fate? No guarantees, for any of us, of course.

How Writers Can Illuminate Better Care at the End of Life

Excerpts from an article I wrote for the Last Acts Writers Project in 1998.

So many of our loved ones do not die gracefully. Practically anyone you talk to about this issue will tell you about their aunt, or neighbor, or grandfather, or teacher who died alone -- or in a nursing home where she didn't want to be, or in a hospital ICU instead of his bed at home -- poorly medicated, in unnecessary pain, hooked up to machines.

A growing movement is afoot to change these patterns of care, to create a better match between the kinds of care people want and what they receive.

Mass media...can show people how to talk about dying. How many people keep silent, thinking, "I just don't know what to say to him!"

Stories can show the strength and burdens of family caregivers. They can show what good care of the dying is and how families can fight for it. And, they can show the impact of death and loss on family members and the community. By revealing how badly dying is often handled and how well it could be done, the media also help set the public agenda for change.

There are as many ways to approach this topic as there are personal stories of death -- good deaths and bad ones alike. Such portrayals can show the emotional, spiritual, legal and financial tangles of dying, as well as its medical aspects. Accuracy in these portrayals is important, because myths abound, particularly about pain control. In our country, dying patients, their families, and sometimes even doctors may be reluctant to use adequate pain medication for fear of addiction-ridiculous when you think of it, but true nonetheless. Doctors also fear reprisals from medical oversight agencies, whose role presumably is to protect patients.

Outlines of dramatic scenarios involving the end of life

A realistic look at the terminally ill, their families, their caregivers -- both professional and nonprofessional-and the decisions they face as the end nears gives rise to a multitude of dramatic stories. Writers can take death out of the shadows, help people understand their choices, and make profound changes in people's lives. Some of the dramatic issues people face are:

• Care for a dying family members that leaves the survivors physically, emotionally and financially bankrupt.
• Treating dying as a strictly medical event, with too little attention to patients' and families' psychological and spiritual needs.
• Doctors who regard death as a defeat for medical science and a personal failure, rather than an inevitable part of life.
• The low priority of pain and symptom control in hospitals and nursing homes, where most people die.

Inadequate pain control due to myths and misunderstandings. (Some palliative care doctors would say pain can "always" be controlled, even though it is controlled less than half the time!

And, very rarely does a person need to be totally sedated, so patients' fears of being "zonked out" are misguided. When that occurs, it may be a sign of poor care.)

Caregiving by family members and friends-an invaluable, but undervalued gift and overwhelming responsibility.

The reality of the "sandwich generation"-growing numbers of Baby Boomers who are caring for both children AND parents, who often live several states away.

Denial and avoidance. People rarely talking about the kind of care they want, which reduces the chance they will get it and increases their loved ones' burdens.

Seeds Sprout Buds in Social Movement to Improve End-of-Life Care: Baby Boomers Lead Charge For "Better Deaths"

Summary: A number of social forces are coming together to demand better care of the dying.

This was an article I wrote in 1997 for the website of the Robert Wood Johnson Foundation's Last Acts Campaign to Improve End-of-Life Care. I was online editor of the web site and editor of a quarterly print newsletter from 1997 to 2000.

The Last Acts coalition has grown from a germ of an idea into a social movement in the two years since the Robert Wood Johnson Foundation first contacted a handful of experts and organizations to discuss ways to improve the dismal state of care for people at the end of life.

Hundreds of organizations--a diverse array of physicians, nurses, chaplains, hospice workers, ethicists, social workers, art therapists, and health care consumers--now participate in the campaign.

And society at large is embracing the subject with growing interest and acceptance.

"The nation is suddenly awash in scholarly projects on death, or what some professionals call the 'end of life experience,' " Judith Miller wrote in The New York Times on Nov. 22, 1997. "There are seminars, debates, books, articles, college classes, courses for screenwriters, exhibitions, films, television programs and Web sites on death, as well as grassroots projects aimed at enabling Americans to die more gracefully and in less pain."

Summing up this emerging movement, The Times wrote: "Baby boomers want less pain and more grace before the good night."

In addition to the aging of the baby-boomer generation, the movement has been fueled by:

advances in medical technology that make possible the extension of physical life to the point of a severely diminished quality of life;

the shift, over the last half-century, from home care to institutionalization of the dying, and increasing dissatisfaction among families and patients with how impersonal care of the dying has become;

the AIDS epidemic, bringing a new awareness of end-of-life issues among an energetic younger generation who have begun to question and challenge the assumptions of medical and other health care professionals;

battles over assisted suicide, dramatically illustrated by the crusade of Dr. Jack Kavorkian and Oregon's "Death With Dignity" Act.

millions of dollars in grants for research, improvements in palliative care, model programs, and communications projects on end-of-life issues. Led by grants from RWJF, and grants from philanthropist George Soros' Project on Death in America, these initiatives seek to transform the culture and experience of dying in the U.S.

Most notable of the research was the $28-million Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), sponsored by RWJF, that make clear beyond doubt that the health care system has failed to meet the needs of the dying.

These studies have confirmed what many people on the community level already know, Daniel Zaworski, MD, wrote in the Lorain, Ohio Morning Journal, Oct. 29, 1997. "As healthcare consumers, as human beings, we are ready for a fundamental change in the way we die."

More Advance Planning, Compassionate Care Needed for the Dying, Legislators Declare: Rockefeller Wants to Make Advance Directives Commonplace

(Excerpts from an article I wrote in 1999 for the Last Acts Campaign to Improve End-of-Life Care. The legislation has since been renamed the Compassionate Care and Advance Directives Act. To follow legislative news, click.) 

Senators Jay Rockefeller of West Virginia and Susan Collins of Maine have reintroduced legislation to give people more information about completing living wills, more access to professionals who are experts in end-of-life decision-making, and more control when taking on issues of terminal illness.

Seniors Share Desire for Better End-of-Life Care; Online Forum Gives Citizens A Chance to Ponder, Choose

Summary: SeniorNet's experiment in electronic democracy gives citizens over 50 an opportunity to discuss end-of-life care.

As a consultant to SeniorNet and to the Robert Wood Johnson Foundation's Last Acts Campaign to improve end-of-life care, I created an online forum for senior citizens to discuss the kind of end-of-life care they desired. This was an article I wrote in 1999 that appeared on various web sites, in the Last Acts newsletter, and in Current, the magazine of the American College of Health Care Administrators.

Years ago, Marie Dietz filled out an advance directive requesting, in the event of critical illness, that she should never be attached to a respirator. She recently logged onto an Internet discussion group to explain how she has changed her mind.

Dietz is just one of about 200 senior citizens who are gathering at the SeniorNet Solutions Forum to address an innately difficult topic: the prospect of their own deaths. While the subject may seem unnecessarily gruesome to some, many of the participants seem to derive value--creativity, comfort, control--from this very personal experiment in electronic democracy. It is part of a growing trend to encourage senior citizens to think about and discuss the end-of-life care they would want before they need it.

"Three years ago, my husband and my best friend were told that I was dying," she wrote to the nonprofit online community of 25,000 senior citizens. Her doctor put her on a respirator despite her written request. "Sure enough! I'm still here," Dietz said. "I'm on oxygen therapy but I want to tell everyone how glad I am that I'm still here." She has now changed her written instructions "so that I will have a respirator if it's indicated again. Yes, giving up a very active life is hard, but a person's worth is NOT in what they do, it is in who they are. Every person has an innate dignity, and that gives dignity to both their life and their death. Life is worth living!"

An interactive poll on the site gauges participants' views on the many issues surrounding end-of-life care--pain management, advance directives, physician-assisted suicide and hospice. The most dramatic finding so far is that more than half of the 1,400 participants--the vast majority of whom are over 50--would consider assisted suicide.

"I vote for 'pulling the plug' if I'm comatose as long as 72 hours," writes Ruth Ann Bice of Nashville. "Since my husband died, I do not fear my death," writes Kathleen Zobel. "I do fear what can lead up to it, and it is that knowledge that convinces me I will have control as to when I die."

On the other hand, Elna Tymes writes that "suicide [is] a way of giving up too soon." Ricki D. fears that "someone else may kill me someday because of THEIR perception of MY quality of life"--that if assisted suicide is legalized, it might lead to involuntary euthanasia as it has in other countries.

Shirley Schutt writes from a town of 300 in Eastern Nebraska, and tells of the plans she and her husband have made for their final service. "We chose exactly what we wanted and how we wanted it to be. We have our burial location chosen and our headstone in place, designed by us." Still in good health, Schutt is part of a five-generation family, which she displays with pride on her web site--complete with music and animation.

From Austin, Texas, Barbara St. Aubrey writes that her "greatest fear is that I would be too ill to communicate and therefore be subject to others making choices about mostly what I hear. To say now, I do not want tubes, etc. is easy--I am not facing imminent death. To lie helpless with little chance for some form of recovery would seem intolerable." Just participating in SeniorNet's online discussion "has me to make a list of music I would like to have played, if for any reason I was in a hospital, especially during surgery." Later, she adds that "to die well is a gift, and maybe, in addition to creating life, the greatest gift we can give our families."

Instead of descending into an acrimonious debate over the ethics of assisted suicide, the participants in the SeniorNet Forum generally shared their own personal views and experience on end-of-life issues.

Elizabeth Menkin, a Hospice physician in California, writes that some of her patients and their families "have been my greatest teachers, showing me that how they live the end of their life--how they live until they die, with courage and appreciation and forgiveness--is a source of great strength and inspiration for the survivors." While giving assistance "is a healing activity for family and loved ones," caregivers are too often overburdened and overwhelmed. "The burden needs to be adjusted to a manageable load."

She is not encouraged that medical care and health insurance will soon make the load more manageable for families of people who are dying. "It would not be 'good business' to attract subscribers because in the present structure of Medicare, they would go out of business from the 'adverse selection.'"

She quotes Dr. Joanne Lynn, a leading researcher in end-of-life care, that "we will know we have arrived at a system that fosters good end-of-life care when health insurance companies advertise with pictures of old people in bed at home, surrounded by loved ones, rather than with pictures of senior citizens in tennis outfits."

The Solutions Forum on SeniorNet was sponsored by Metlife.