Standing at her sink or sweeping the back porch ... Margaret was very thankful for the healthy function of her own brain, which she could still count on to click into gear more or less as it was meant to. She would rather be dead a thousand times over than live on the way he did. But of course that's what he would have said too, before. When she thought these words she heard his young man's voice, content again with an ordinary young man's strength, speaking them, "I'd rather be dead a thousand times over."
-- A Good House by Bonnie Burnard
It's a given -- none of us wants to die and we all know we will. As Woody Allen reminded us, besides taxes, death is the only inevitable event in our lives.
Beginning at middle age, or perhaps in the midst of a particularly harrowing illness, we obsess about what form death will eventually take, how soon or how late it will come, if we'll be ready -- how, when and if death can be headed off.
But until just recently, in modern America, death has been a subject beyond the limits of polite conversation. Ours is a nation bent on youth with a relatively short developmental history, high hopes, abundant energy, big dreams. When it comes to death, America has been like the cocky adolescent who believes no harm can come his way.
That has changed. As the century has turned, so has the desire for a new, more honest public dialogue about death. Too many of the current generation of middle-aged Americans have watched their parents and grandparents die hooked up to machines in hospital wards or nursing homes surrounded by the smell of Lysol and the sound of machines beeping -- a manner of death unfamiliar in the first half of the last century when it was understood we would die at home, cared for by our loved ones.
Medical technology has extended our lives with antibiotics, surgical intervention and innumerable reparative therapies, but the field of medicine has been slow to catch on to the specific needs of the dying. And too much is now known and feared about the economic consequences of a long, slow death. Will Medicare still be there when the Boomers hit 65? After all these years of obsessing over building adequate retirement funds, will we be wiped out financially in one fell swoop when a catastrophic illness comes our way?
In the past month, death has been featured on a three-part PBS Bill Moyers series and has hit the cover of Time magazine. With the aging of the nation's largest, most affluent, and most self-centered generation -- and the certainty of the coming death of their parents -- comes a public outcry for better and more certain terms at the end of life. And with that outcry come the unavoidable questions: How will we know when we are ready? Have we let our families and friends know how we want to die? Will we be prepared when our time -- or our parents' time -- comes, and will we have the means to seek the end-of-life options we desire?
Kay: Sing a song of sixpence
Kay Arnold, a 78-year-old longtime Westside resident, has spent the past several months preparing to die. A bright, active woman, Arnold became frustrated when a recurrence of cancer last year caused her such severe pain she could not function at her normal level. She opted for a short course of radiation, which momentarily eased her symptoms. But the pain returned sharp and fast, and Arnold's options were limited -- surgery was not recommended and she would not accept chemotherapy. Eventually, she checked into Pikes Peak Hospice as a resident, presumably until death.
"Pain has been my enemy for the past few years," said Arnold, then quickly added, "With this time here to plan my death, I've been very productive."
At Pikes Peak Hospice, Arnold has received a broad regimen of palliative care -- medical treatment designed to relieve and ease symptoms but not to cure the disease. The patient's physical, spiritual and emotional needs preceding death are taken into account and are administered on a basis customized for each individual. Arnold is massaged weekly by a hospice volunteer, has been part of a study that used acupuncture for pain relief, receives medication around the clock to control her pain, and, most importantly, has been given the time and presence of mind to wrap up her affairs.
At her side is her daughter, Cathy Paradise, who returned to Colorado Springs in January to be near her ailing mother. "Her doctor told us 'It's up to a parent to teach a child how to die,' " said Paradise, "and she took that to heart. Once she entered Hospice, it took her a few days to relinquish control. But there has been a visible difference; her face is no longer so deeply furrowed and lined with pain."
Arnold was told on Aug. 3 that she would likely live less than six months -- the kind of terminal diagnosis required for admission to hospice care. "I found out about [hospice care] being available either at home or at the residence," she said. She opted for residency, adamant she did not want to adversely disrupt her daughter's life, and has lived at Pikes Peak Hospice in the St. Francis health complex for almost six weeks now, gradually diminishing in strength but preparing for her passing in great detail.
"I've donated my body to the State Anatomical Society," said Arnold, adding that she was formerly married to a physician who, as a medical student, showed her the cadaver he was dissecting to learn human anatomy. "My daughter is working on a shroud -- a sheet and thermal blanket sown together. And I've arranged for a memorial service and not a wake, but a party."
The service, to be held at All Souls Unitarian Church, will follow Arnold's carefully handwritten script, with a gathering afterward of friends and family. A former home economist, Arnold has clipped a recipe for vanilla rum creams she hopes will be served at the reception, following a prayer and a song:
"Thanks to goddess for bread, for friends, for joy and sorrow, for the comfort of quietness," will be the recited prayer, Arnold announces, her cinnamon-colored eyes sparkling as she launches into a full-throated rendition of the song to be led by Cathy: "Sing a song of sixpence, a pocket full of rye/ Four and twenty blackbirds baked in a pie ..."
Three weeks after our first meeting, Arnold has visibly weakened. She spends less time out of bed and can no longer eat without extreme difficulty. She is still focused, however, on being productive to the last, planning a fund-raiser for Hospice.
"I call this place paradise," she said. "I know there are people here who are really sick and are bed- or room-bound, but it's paradise for me."
Trouble ahead, trouble behind
As it was, he didn't mean to die at all. He talked about death's avoidance matter-of-factly, as if the ending of a life was a virus that smart people could protect themselves from, given enough common sense. He gathered what he called the relevant information. He went to the doctor almost weekly, had himself thoroughly checked over even if it was only heartburn that had got him the appointment. He boldly printed the number 911 on a piece of cardboard he'd stapled to the cupboard above the phone in the kitchen, in case he was struck, he said, when she'd left him on his own.
-- Burnard, A Good House
Our general reticence about death is not strictly personal, but institutional and cultural as well. The Project on Death in America (PDIA), a project of the Open Society Institute, a nonprofit foundation supported and founded by philanthropist George Soros, has dedicated more than $15 million to projects aimed at bringing our collective consciousness about death to the forefront of public discussion.
PDIA has granted funds to assess physician training programs to determine the extent to which examinations and training are directed toward care of the dying, control of pain and assisting patients in establishing advance directives -- formal, legal plans such as living wills or the assignment of medical power-of-attorney to a trusted loved one.
These arrangements and end-of-life decisions are often left up to family members who may or may not know the exact wishes of the person dying, but a rising number of health professionals in the field of palliative care argue that physicians should assist patients earlier in the disease process to let their end-of-life wishes be known.
"It's not uncommon for the patient to be ready and the family to not be ready," said Beth Byer, vice-president of development for Pikes Peak Hospice, adding that doctors, understandably, are often reluctant to assign a terminal prognosis, further complicating the issue.
A recent panel discussion sponsored by the El Paso Medical Society, in anticipation of the Moyers series on PBS, reflected many of the same concerns. Dr. Stephen Telatnik, a local pulmonologist and Pikes Peak Hospice staff physician, said that of his large population of patients, only 40 percent have advance directives in place.
The panel, composed of Springs health-care professionals, social workers and Hospice personnel, identified these pressing community needs around the subject of end-of-life options: 1) getting information out about options, financing and advance directives; 2) the importance of physicians listening to patients and understanding their personal needs; 3) concern over the whole medical reimbursement program with the rise of HMO's and managed care; 4) the importance of patients having specific conversations with loved ones, informing them of their wishes; 5) incorporating dying as more a part of our conversations, as part of life; 6) bringing physicians on board to help; and 7) introducing palliative care earlier in the process.
Diane Archer, executive director of the Medicare Rights Center, a Project on Dying in America grant recipient, identifies "lack of information about financing options for end-of-life care" as "a substantial barrier to quality care at end of life. Medicare hospice and home health-care benefits for the terminally ill in both the fee-for-service and HMO settings need to be clarified and publicized."
Much of the cost of palliative care for hospitalized patients is not reimbursable under the current system, which relies heavily on HMO-contracted physicians for health-care delivery. Palliative-care professionals are working to change that, attempting to create a DRG (Disease Relater Group) that will allow payment for terminal care services, thereby validating the function of end-of-life care for doctors and hospitals that have up to now focused almost exclusively on curative and life-extension measures. (According to a Time/CNN poll, more than a third of dying people in the United States spend at least 10 days in intensive-care units undergoing "tortuous attempts at a cure," nearly half of Americans die in pain, "surrounded and treated by strangers," and three out of five physicians treating dying patients "had known them less than a week.")
A 1996 New England Journal of Medicine study showed that patients entering hospice programs survive an average of about 36 days (a figure that Byer says is the average in Colorado Springs), and went on to emphasize that patients should spend closer to three months in such programs to receive full care and assessment of the patient's and family's medical and personal needs. A recent edition of the Pikes Peak Hospice newsletter echoes that concern:
"Everyone working in hospice care these days knows of the great frustrations felt by all when the patient's length of stay in our program is very short," the newsletter states. In response, Pikes Peak Hospice has developed a Rapid Response Team (RRT), where a specialized interdisciplinary team is set up to specifically assess and deliver "very focused team support, as quickly as possible, to patients who appear upon admission to have a prognosis of a few days and a lot of care needs."
It is the hope of the RRT that the patient will stabilize and will be able to receive the full accounting of hospice care and preparation before dying, but that is not usually the case.
Lyn: How do we know when it is our time?
At eighty-one Margaret understood death's ways and means with a clarity she would never have anticipated and she half surrendered herself to this understanding as if the surrendering could go some way toward appeasement. Death could come hard and fast ... ensuring that nothing could get done, nothing could get said before and not much after that was any use to anyone. Or it could come over a few decent months ... giving everyone time but not too much of it, not so much you couldn't get through. ... Or it could come in slow time, taking show-off, brazen, slow-march strides. It could let you watch, knowing with cocky confidence that you wouldn't look away.
-- Burnard, A Good House
The ultimate question becomes this: How do we know when it is our time to die?
For the majority, acceptance of death comes with old age. For the choice few with religious and spiritual convictions strong enough to ease the passage, acceptance comes with the knowledge that death is part of a timeless continuum.
But for some, stricken with diseases generally considered to be terminal at unthinkably young ages, the issue becomes when to stop fighting -- or how to fight.
Local radio announcer and beloved community activist, Lyn Akers, is currently exercising her option to pursue an alternative cure for cancer with the help of a group of her closest friends.
"This is bout number three with cancer," said Akers in a recent telephone interview. "I have an inoperable tumor."
Akers was hospitalized a few months back with a recurring cancer, was operated on and returned home. But in a few short weeks, her cancer returned and she was told there's a 20 percent chance that chemotherapy would shrink the tumor. She rejected that slim option for a radical alternative therapy on which she is pinning her complete focus and trust -- a regimen of juicing, cleansing and organics along with extreme body and mind-body work called the Schulze program.
"If I were doing chemo right now, I would not be talking to you," she said. "I'd be throwing up, I'd be wasting away, all my vitality would be gone."
"He (Dr. Richard Schulze) has been fined, shut down, thrown in jail, in the fine tradition of most alternative healers," said Akers, adding that Schulze has bucked the AMA and attacked the powerful beef and dairy industries. In his work for 10 years in what was called the Incurables Clinic, Schulze took on those patients the medical profession had sent home to die, and reportedly saw some miraculous cures based on his treatment. He proposes that there are three types of patients who are really incurable: 1) those who like to be sick; 2) those whose time has come; and 3) those who simply will not follow the program, no matter how sick they are.
Akers' friends prepare juices and a special potassium broth for her twice each week, and assist her with the brutal daily exercise of alternating hot and cold showers for 15 minutes. And while she endures excruciating physical work, she presses ahead with the accompanying emotional and spiritual work assigned by the Schulze plan: "Bury your possessions before they bury you. Do all the emotional work: get busy and do it all. Go over your life, forgive it, forgive others, forgive yourself."
"So far, I have not turned it around," she said, admitting that there have been nights when she has been so exhausted that she has not wanted to proceed. But her friends' physical and emotional support has helped her to stick to the program, and at two weeks into a 30-day regimen, she is not discouraged. "The program is 30 days. At the end, if you feel no relief, you just dive right in again."
Akers doesn't see the Schulze plan as a "magic bullet" cure but as a complete life-altering experience, whether it is successful or not.
"I don't know if this will work. I know that it can," she said. And she does not completely dismiss the possibility of death. "I've told my friends, look you guys, even if I am to die, I want to die at home. I don't want to die in a hospital with lights and tubes and people sneaking in and out, surrounded by strangers."
Like most of us, Akers admits she does not know how we can be sure our time has come.
"Good question," she said. "I don't know. I don't have a direct line to God."
Kay: Wrapping it up
I feel 16 again -- truly rejuvenated! Am remembering my 16th birthday party in Shawnee Park, in an alcove near the lower road, facing the Ohio River and the lights of New Albany, Indiana. Could see the Colgate Clock at dusk. Mother had made an Eisenhower jacket and skirt of black-blue plaid with silky yellow thread (nubby) through. Could have been sheer wool, but don't remember the fiber. It was a wiener roast with marshmallows at the end -- one fire and singing around it. Mother and Elmer hosts. It was the first birthday party I remember.
--Notes for a personal history by Kay Arnold, written two weeks after entering Pikes Peak Hospice
Kay Arnold has drawn a headline on her handwritten obituary, neatly penned on a yellow legal pad: Good Life -- Good Death.
Her time spent under hospice care has been dedicated to dying well, and at the same time, she has focused on the aspects of her life that made it good.
As her body has grown weaker, she has maintained a steady focus on the tenets of good health she learned as a home economist and, from time to time, her mind has rewarded her with a vivid memory from the past. On this particular visit, she tells me a joke that she remembered this morning some 30 years after first hearing it.
"No cow's milk or products," she warns me. "It's for calves, not for humans!" Arnold expresses alarm that the Meat Institute and the American Dairy Association were the only sources of nutrition education in the public schools during her years in the field.
She constantly writes notes to herself and others, making sure she leaves no business undone. She watched the Bill Moyers series on PBS and felt it ended without addressing one of the key issues of dying -- what the family is left to do after a loved one dies.
"They just chopped it off. What to do after someone dies -- that's another thing people need to know." Aside from the fund-raiser for Hospice, addressing this problem is one of two projects Arnold hopes to complete before she dies.
"I don't want to live a long time here," she says, looking around her warmly decorated room, her eyes stopping to rest on a bulletin board covered with colorful cards from friends.
"I just want to get my two projects on their way. Then I'll stop eating, maybe stop drinking ... then I'll transmogrify!"
She smiles, caressing the phrase. "I got that from Calvin and Hobbes."