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Compassionate Care Journal

A Publication of The Nebraska Coalition for Compassionate Care, PO Box 94714, Lincoln, NE 68509-4714

  November 2000, Volume 4.3 (Other newsletters include: Spring, 20001, Vol. 5.1; Winter 2000-01, Vol. 4.4; July 2000, Vol. 4.2; April 2000, Vol. 4.1; January 2000, Vol. 3.4; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

The Case Against Assisted Suicide

The Jewish Week, September 15, 2000 by Nathan Diament

(New York) For the second time in less than four years, a debate is taking place in our nation over the issue of physician-assisted suicide. This week PBS aired a Bill Moyers report on the subject of death and dying today in America with an extensive discussion of assisted suicide. Next week the U.S. Senate is expected to debate the Pain Relief Promotion Act, a bipartisan measure that will address this critical issue in a meaningful way. It is a debate that has serious moral and public policy implications and one on which Jewish tradition is quite clear, for Judaism values life.

The "pop" image of physician-assisted suicide is that of Jack Kevorkian administering a lethal injection to an ailing individual on "60 Minutes."

The image offered by advocates of its legalization is certainly more sympathetic; it imagines a terminally ill person suffering horrible pain due to the inadequacy of legal pain relief medications; allowing someone to "die with dignity" is the truest act of love in such circumstances. Unfortunately, this sympathetic image is as detached from reality and the kind of society we should champion as is the first.

Last year, the Portland Oregonian newspaper featured a detailed account of one person's assisted suicide odyssey from the only state where this practice has been legalized. The account highlighted the real-world dangers inherent in the legalization of this practice, especially as relates to those least capable of protecting themselves from harm. Eighty-five-year-old Kate Cheney, suffering from inoperable cancer, petitioned to be assisted in committing suicide. As a result of her illness, she suffered bouts of dementia and was therefore, referred by her doctor to a psychiatrist for evaluation as required by Oregon's "Death With Dignity" law. The psychiatrist found Cheney to be suffering from short-term memory loss and, more worrisome, wrote that Cheney's daughter was the proponent of the suicide much more than Kate herself. Cheney was thus refused assistance in killing herself.

But the story does not end there. Cheney's daughter took her suffering mother to a second doctor who referred her to a psychologist, who determined that the mother was competent to kill herself with assistance. The final decision on the matter fell to the "ethicist administrator" for Kate Cheney's HMO; he approved the lethal prescription, she took it, and died. Reflecting upon this report, the Oregonian editorialized that "tales of some Oregon assisted suicides betray more troubling issues than anything assisted suicide foes could call up," and underscored the substantial financial interest health insurance companies have in terminal patients committing suicide rather than insisting upon receiving costly palliative care.

We well know that Jewish tradition holds the preservation of human life as one of its supreme moral values. It takes precedence over virtually all other moral values to the degree that only the violation of three cardinal sins (idolatry, adultery and murder) in limited circumstances can claim precedence over the imperative to preserve life. Nevertheless, Judaism — acutely linked to the reality of the human condition — realizes there are circumstances in which a person might long for death.

The Talmud reports of Rabbi Judah the Prince suffering great pain from an illness and his righteous maidservant praying for his death as an end to his suffering. At least one commentator cites this passage as an approbation of paring for the merciful death for one suffering in pain from illness. Even with this appreciation of our human reality, Jewish law does not reduce the mandate that we preserve life, even under the most challenging conditions. While rabbinic authorities, ancient and modern, debate whether under limited circumstances medical treatments may be withheld from a suffering person (thus, no longer delaying an inevitable death), it is abundantly clear that one may not proactively hasten death. At the same time, Jewish law would endorse the aggressive palliation of pain to a degree not currently practiced in the medical profession. 

Rabbinic authorities place such treatment under the rubric of loving one's neighbor as one's self (Leviticus 19:18) and condone even the use of narcotics to ameliorate a person's pain. In 1997, the U.S. Supreme Court was asked to invalidate state laws in New York and Washington that criminalized physician-assisted suicide and recognize a constitutionally protected right to obtain such assistance. The Orthodox Union, along with many other concerned constituencies, argued before the high court that the Constitution clearly did not speak to this issue, let alone resolve it in favor of a right to die. The court prudently ruled as such and recognized that this policy debate should be resolved in a legislative body, not a court.

America's national legislature has now acted upon the court's holding. Last year, the House of Representatives took up this critical issue and voted 271 to 156 in favor of the Pain Relief Promotion Act. This measure does two important things thoroughly consistent with the Jewish values outlined above.

  • First, it promotes the aggressive treatment of pain by offering doctors a "safe harbor" for prescribing controlled substances to reduce pain, even if the use of these otherwise illegal drugs results - unintentionally - in the patient's death.

  • Second, the bill largely overrules an Oregon law legalizing physician-assisted suicide in that state.

The bill has been endorsed by many groups including the Orthodox Union, American Medical Association, National Conference of Catholic Bishops as well as former Surgeon General C. Everett Koop. It will bring comfort to the ill and ensure that the medical profession remains faithful to its call as healer, not agent of death. It deserves the strong support of the Jewish community and should be passed to the benefit of us all.  

Nathan Diament, Director, Institute for Public Affairs, Union of Orthodox

The Tragic Myth About Pain Control

Vernal "Bob" Ohlrich has just been paroled after serving one year of his prison term for killing his 74 year-old wife Phyllis in Hebron, Nebraska. Mr. Ohlrich was motivated by the fact that his wife was in great pain and by his belief that she had cancer. He walked into the Thayer County Hospital, shot her, and then apparently attempted suicide, but was thwarted by the gun jamming.

Mr. Ohlrich now says, "…I've come to realize it was the wrong thing to do and I would not do it again."

Despite the dispute whether Mrs. Ohlrich did in fact have cancer, many people seem to share Mr. Ohlrich’s mistaken belief that only death could ease her suffering. The tragedy of murder motivated by mercy can be avoided if patients and families learn that modern medicine has developed an amazing ability to control end-of-life pain.

Recognizing that every patient’s body responds in its own unique way to pain, specialists can offer a wide variety of medication choices, dosages, and methods of delivery, e.g., drops under the tongue, patches on the skin, infusions just under the skin, rectal suppositories, and intervenous lines.

Also available are medical devices and surgical procedures as well as non-drug therapies that can be used alone or together with drug therapy. Examples include relaxation, imagery, music, massage, hypnosis and humor. 

The bottom line is that modern medicine can relieve pain for people with terminal conditions and can eliminate or greatly reduce pain for people with chronic conditions.

Studies have shown that many doctors and nurses themselves are not aware of the advances in modern pain control, which means that patients and families may need to be proactive to put their health team in contact with pain management experts, readily available in Nebraska. (The Nebraska Medical Association has participated in efforts of the American Medical Association to train physicians about appropriate end-of-life care.)

Let’s not forget that the Ohlrich incident almost led to the loss of two human lives. Mr. Ohlrich’s suicide attempt was presumably based upon the same sense of helplessness and hopelessness that prompted him to kill his wife.

We will never know how many lives have been lost to assisted-suicide and murder-suicide because good and loving people did not receive adequate pain control or were not properly diagnosed for depression, causing a false belief that they had no alternatives.

For a better understanding of these alternatives, we encourage citizens to contact their local hospice provider or the Nebraska Coalition for Compassionate Care. The Coalition is comprised of health care professionals, hospitals, hospice programs, long-term care facilities, and concerned individuals and groups working together to assure that all Nebraskans have access to high quality end-of-life care. We are alert to the special needs of patients and families in rural Nebraska, as well as those of people who live in larger communities.

If you would like more information about the organization or about specific end-of-life care needs, please contact us via e-mail at NCC or at PO Box 94714 Lincoln, NE 68509-4714. We're here to help.

By Rosemary Anton, J.D., M.A., attorney, and LaDonna Van Engen, R.N., hospice nurse. Both are members of the Operations Board of Nebraska Coalition for Compassionate Care.

 

Why I Joined NCCC... by Sr. Barbara Brumleve

I treasure sacred, awesome places where I've walked like St. Peter's Basilica in Rome, Monk's Mound in Cahokia, the Grand Canyon. I reverence the intimate times of my life, times of deep friendship and love, when silence speaks more eloquently than words. I am humbled before the major passages of life, like birth. Dying and death is a sacred, awesome place, an intimate time, a major passage. I treasure it, reverence it, am humbled before it. For that reason I choose to be part of the Nebraska Coalition for Compassionate Care.

Sr. Barbara Brumleve, is a member of the NCCC Operations Board and is Director of Pastoral Care at Alegent Health, Omaha.

News Notes

Survey indicates oncologists support for euthanasia and physician-assisted suicide declined dramatically

Oncologists trained in end-of-life care less likely to support both options. More education still needed to help physicians care for dying patients

Alexandria, VA -- Results of a survey of 3,299 members of the American Society of Clinical Oncology (ASCO) indicate support among U.S. oncologists for euthanasia and physician-assisted suicide of terminally ill cancer patients declined dramatically in recent years. The survey, sponsored by ASCO, also found that oncologists who had been trained in end-of-life care were less likely to support or carry out euthanasia or physician-assisted suicide.

The survey’s results, published in the October 3rd issue of the Annals of Internal Medicine (Vol. 133, No. 7), emphasize the need to educate physicians about ways to provide high-quality pain management and palliative care to dying patients, says lead researcher Ezekiel J. Emanuel, M.D., Ph.D., Chief of the National Institutes of Health’s Department of Clinical Bioethics. "End-of-Life and palliative care need to be formally taught and incorporated into physician training programs and continuing medical education," he adds. "Physicians who receive better training in end-of-life care seem less likely to perform euthanasia or physician-assisted suicide."

The survey, conducted in 1998, is the largest to assess the attitudes and practices of physicians about euthanasia and physician-assisted suicide. When researchers compared these results to a similar survey conducted in 1994 by Dr. Emanuel, they found that oncologists’ support for euthanasia for dying cancer patients in excruciating pain declined by nearly 70% -- from 23% in 1994 to just below 7% in 1998. Support among oncologists for physician-assisted suicide in the case of a terminally ill cancer patient with unremitting pain declined by over 50% -- from 45% to 22% in the same four years.

The overall decline in support for euthanasia and physician-assisted suicide may reflect an improved ability by some oncologists to provide appropriate care for their dying patients, says Dr. Emanuel. In fact, oncologists who said they could get their dying patients all the care they needed were far less likely to perform euthanasia than those who reported administrative, fiscal or other barriers to providing care.

"ASCO believes that physicians have an obligation to talk to their terminally ill patients and their family about their options for palliative care and what type of symptomatic management will be provided. We urge physicians to assure their patients that they will not be left to make these difficult decisions on their own." said Charles M. Balch, M.D., Exec. Vice President and Chief Executive Officer of ASCO. "ASCO has pledged to take every responsible measure to assure that all physicians are well versed in providing optimal end-of-life care and to remove all barriers to the delivery of such care."

More than 70% of patients using euthanasia and physician-assisted suicide have cancer. As a result, oncologists are more likely to have to address the issue of euthanasia and physician-assisted suicide more often than other physicians.

Of those oncologists surveyed in 1998, almost 16% said they would be willing to provide physician-assisted suicide and 2% would be willing to carry out euthanasia. Least likely to support euthanasia or physician-assisted suicide were physicians who had sufficient time to talk to their dying patients about end-of-life care and those who were religious.

Nearly one-third of the oncologists surveyed also said they would be reluctant to increase the dosage of morphine for a dying cancer patient in excruciating pain. This reticence to relieve patients’ pain seems to reflect some physicians’ fears that increasing the dose of morphine may also raise a patient’s risk of respiratory depression and death, which might be construed as a form of euthanasia. "Unfortunately, equating increasing morphine for pain relief with euthanasia seems to lead to inadequate pain management for patients, which is troubling," said Dr. Emanuel. "Physicians must be educated about the ethical and legal acceptability of increasing narcotics for pain control, even at the risk of death."

"These study results underscore the need for physician education of optimal pain and palliative care practices," said researcher Robert J. Mayer, M.D., Vice Chair for Academic Affairs, Dana-Farber Cancer Institute, Professor of Medicine, Harvard Medical School, and Past-President of ASCO, under whose leadership the study was initiated. "Physicians who are better informed about end-of-life issues feel less need to use euthanasia and physician-assisted suicide."

Seventeen percent of oncologists surveyed were female and 33% worked in an academic setting; two-thirds said that 25 or more of their patients had died in the past year. Oncologists’ attitudes did not differ by age, sex, geographic region, year of graduation from medical school or the number of their patients who died in the previous year. Sixty-three percent of oncologists had received requests for euthanasia and physician-assisted suicide during their careers, and 31% had received such requests during the previous 12 months. Overall, nearly 11% of respondents had performed physician-assisted suicide and almost 4% had carried out euthanasia.

10-2-00 Statement by American Society of Clinical Oncology

Book Review:

FINAL WISHES by Paul Chamberlain

Book Reviewed by Scott McPherson, M.D.

Your friend has an incurable illness and is dying. He calls one day tells you that he wants you to help him commit suicide. What is your response?

That is the premise of Paul Chamberlain's new book. The author plunges us into the midst of the ethical dilemma hotly debated around the world. Many states have considered physician assisted suicide but only one has legalized the practice. This story highlights a (fictional, yet) probable state senatorial debate about the legalization of physician-assisted suicide. Experts make their cases known. Statistics fly and tempers flare. It is clear that most have their minds made up and the final decision rests in the hands of a few who are undecided. As the debate roils, two physician friends struggle with a much more personalized version of the debate. Dr. Patrick Metcalf is dying a slow death and he asked his longtime friend and medical school classmate, Ron Grey to help him take his own life. Ron has no previous experience in physician-assisted suicide and it forces him to face the issue head on.

The readers gain an education about palliative care and end-of-life care along with Ron as he attends the senatorial debates. The readers will have to discover the outcome on their own, weighing the evidence for themselves. As physicians and care providers, we may well face a similar challenge in our own lives. All the elements are present in this book to help us to make the right choice and offer up the best answers to challenge those who champion physician-assisted suicide.

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Compassionate Care Journal

A Publication of The Nebraska Coalition for Compassionate Care, PO Box 94714, Lincoln, NE 68509-4714

July 2000, Volume 4.2 (Other newsletters include: Spring, 20001, Vol. 5.1; Winter 2000-01, Vol. 4.4; November 2000, Vol. 4.3April 2000, Vol. 4.1, January 2000, Vol. 3.4; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

"Affirming Life In the Face of Death"

Second Annual Conference

May 4, 2000, Center for Continuing Ed

Executive Summary

(Lincoln) The Nebraska Coalition for Compassionate Care held its second successful conference on May 4, 2000 at the Nebraska Center for Continuing Education in Lincoln. The conference drew 170 enthusiastic participants, representing over 50 Nebraska communities and the neighboring states of Iowa, Minnesota, and South Dakota.

"Affirming Life in the Face of Death" was co-sponsored by the Nebraska Hospice Association and the Nebraska Medical Association. Diversity was reflected in the categories of attendees: physicians, nurses, hospice care workers, clergy, educators, and social workers.

Slightly lower attendance coupled with modest conference fees meant continued reliance on--and gratitude for--the financial support of the following generous contributors: Purdue-Frederick, Pfizer, Alegent Health Ethics Center, St. Francis Medical Center, Creighton University Center for Health Policy and Ethics, and Good Samaritan Hospital.

The Coalition’s Operations Board Chair, Greg Schleppenbach, served as master of ceremonies for the day. Plenary sessions featured three nationally and internationally-known speakers: Rita Marker, J.D., Executive Director of the International Anti-Euthanasia Task Force, Eric Chevlen, M.D. of Youngstown, Ohio, Hospice Director and prominent specialist in treatment of cancer and pain, and Walter Hunter, M.D., National Director for Vista Care Hospice.

In her presentation, "Assisted Suicide: Economic Implications," Mrs. Marker reviewed experiences reported by individuals and doctors under Oregon’s Assisted Suicide Law (now in effect for 3+years), citing examples of the pressures exerted on the terminally ill by families, friends, insurance companies, and government agencies to seek assisted suicide for financial reasons. Dr. Chevlen described the communication "breakdown" that exists between severely ill patients and their physicians and families concerning resuscitation and other end-of-life preferences, with some philosophical suggestions for addressing the situation. Dr. Hunter focused on the nature of suffering, the types of pain (physical, spiritual, emotional, and social) and how to bring hope to the dying, not just through technology, but holistic attention to each individual’s condition and life situation.

In addition to the plenary sessions, participants selected from six different breakout sessions (most repeated) on topics ranging from Advance Directives to End-of-Life Depression and Total Sedation. Four additional health care professionals were on hand to assist with these sessions. Special guests, Nebraska Governor Mike Johanns and former Governor Ben Nelson shared their insights and personal experiences in presentations after lunch and at the end of the afternoon session. The conference closed with the evening banquet of the Nebraska Hospice Association, including presentation of annual service awards, and a keynote address by speaker Ron Willis.

The concluding sentiment in Dr. Hunter's presentation provides a cogent summary of the conference in three short sentences:

"We have heard the cries of those in pain and those who are dying and we have answered their cries. We say to you as health care workers and concerned citizens committed to your care that not one of you must perish at your own hands or at our hands simply because we failed to understand your physical and mental anguish. We will care for you in your dying as we cared for you in your living: with respect, with compassion, with humility, and with love."

PBS Special to Focus on End-of-Life Care

From September 10th through the 13th, PBS will feature a Bill Moyers special series focusing on end-of-life issues. In On Our Own Terms, Bill Moyers reports on remarkable human stories of the dying, their families, and their caregivers as they struggle to balance medical intervention with comfort and humanity at the end of life. The series includes four programs that provide an intimate window into the daily experience of patients and their caregivers, including the decisions they face and the changes they undergo. Along with this deeply personal perspective, medical, legal, and public-policy experts in the end-of-life field discuss the cultural constructs that have shaped how we die and what can be done to improve our society’s approach to dying.

On Our Own Terms is also serving as a springboard for a national outreach effort to encourage discussion and community action on end-of-life issues. This effort relies on collaborations between public television stations, healthcare professionals and institutions, civic organizations, community-based groups, and individuals on the local and national levels.

The Nebraska Coalition for Compassionate Care is currently communicating with Nebraska Public Television to determine ways that NCCC can assist in promoting this special and in getting some exposure for NCCC in the process. To learn more about this special and the various activities related to it, check out its web site at www.pbs.org/onourownterms.

 

Why I Became Involved with NCCC by Sr. Elaine Herold

I was invited to be on The Nebraska Coalition for Compassionate Care Operations Board because of my experience in providing Pastoral/Spiritual Care to dying patients. Ever since the conception of the organization, the intent was to represent a wide range of disciplines from many walks of life. From my perspective, I see how important this is. In bringing hope to the dying, we understand suffering can be caused by physical, spiritual, emotional, and social pain; therefore, only a team of persons with various disciplines can provide holistic balance in addressing the issues related to compassionate care for the dying.

As a chaplain I have the awesome privilege of walking with people as they face life and death issues. Daily I become more aware of the great need for patients and their loved ones to have adequate education, information, communication, and understanding as they face the challenges at end of life. I agreed to join the NCCC because it is an organization that works to provide all of these important elements to both health care professionals and consumers. I hope that through my involvement and the work of NCCC, people will learn what good end-of-life care is and where to find it; that death is not to be feared; and that there is beauty, strength and grace in a life lived to natural death in God’s plan and time.

Sr. Elaine Herold, is a member of the NCCC Operations Board and is Director of Pastoral Care at St. Elizabeth Regional Medical Center

News Notes

STUDY SAYS TRAINING IN END-OF-LIFE CARE IS INADEQUATE

(Chicago-AP) -- A study says leading medical textbooks generally don't tell enough about care for patients at the end of their lives. Dr. Michael Rabow, who led the study says the information exists, but medical students are not getting it. He says pain goes untreated primarily because the focus is on extending life.

The researchers say textbooks covering surgery, AIDS, cardiology and pulmonology had the least information on death. Books with the highest percentage of helpful end-of-life care content were in primary care, geriatrics and psychiatry.

Dr. Rabow is at the University of California at San Francisco. The study is in the February 9th issue of the Journal of the American Medical Association.

Financial Woes Add to Stress of Dying

Writing in the Annals of Internal Medicine, researchers find that financial concerns aggravate the stress of terminal illness and are associated with a greater risk of depression in patients and their families.

The authors surveyed 988 terminally ill patients on their need for assistance in the areas of transportation, nursing care, homemaking and personal care. While 16% of patients had "substantial care needs" in these areas, this figure almost doubled for those with incomes below $15,000 a year. Patients with high care needs were much more likely than others to report that the cost of their illness and care is "a moderate or great economic hardship" for their family. They were

also more likely to have considered suicide or euthanasia, and their caregivers were more likely to have depressive symptoms. The authors note that "fear of being a burden" is known to be "a primary motivation" in requests for assisted suicide. They say that interventions are needed to ease the care needs of these patients without adding to their costs; but physicians can help reduce caregivers' depression "simply by listening well" [E. Emanuel et al., "Understanding Economic and other Burdens of Terminal Illness," Annals of Internal Medicine, 21 March 2000, pp. 451-9]

Excerpted from Life at Risk, March/April 2000

Maine Campaign Kicks Off

A proposal to legalize physician-assisted suicide will appear at the top of Maine's November ballot this year. The ballot question, crafted by supporters, will read: "Should a terminally ill adult, who is of sound mind, be allowed to ask for and receive a doctor's help to die?"

Campaign finance reports show that Mainers for Death with Dignity raised $605,018 through June 1 (chiefly from out-of-state sources) and spent $595,384. Two groups opposing the initiative, the Coalition for the Compassionate Care of the Dying and Maine Citizens Against the Dangers of Physician Assisted Suicide, raised $223,988 and spent $156,499 in the same period. This led to reports that supporters are "outspending opponents by better than 3-1" [AP, 6/8] – which is somewhat misleading, because supporters spent almost half a million dollars solely for paid signature-gatherers to get the proposal on the ballot.

Reporting on a forum on the Portland campus of the University of New England on June 9, a local newspaper described it as a "major coup" for supporters that Dr. Marcia Angell, an editor of the New England Journal of Medicine, came out in support of the Maine proposal. Apparently the paper was unaware that Angell has ardently supported legalization of assisted suicide for years [Portland Press Herald, 6/10].

Reprinted from Life at Risk newsletter, May/June 2000

Coalition Activities. . .

The NCCC is seeking nominations for a few new members to serve on its Operations Board. The Board, which plans and executes the activities of the Coalition, meets in Lincoln from 1:30 to 3:30 pm on the last Tuesday of every other month (January, March, May, etc.). Nominees must be a member of NCCC and subscribe to its complete vision statement. If you or someone you know may be interested or would like additional information about the Board, contact Greg Schleppenbach at 402-477-0204 or by e-mail: gregschlepp@alltel.net.

NCCC To Produce Summary of Nebraska Laws and Policies Related to End-of-Life Issues

The NCCC Operations Board decided at a recent meeting to contract with a law student or recent graduate to compile and publish an up-to-date and comprehensive summary of all Nebraska laws, authoritative jurisprudence and policies that impact the provision of end-of-life care. One of the barriers to good end-of-life care is a perception on the part of many Nebraska health care providers that the provision of good end-of-life care entails serious legal risks. This fear of health care providers is largely unfounded and probably the result of a lack of reliable information. Hence, the purpose of this project is to alleviate this fear with accurate information and ultimately improve end-of-life care in Nebraska.

Ms. Cheryl Eastman, a 2000 graduate of Creighton University Law School was chosen by the Operations Board to complete this project. She will work under the supervision of Dr. Jos Welie, a member of the Operations Board who is on the staff of the Creighton University Center for Health, Policy and Ethics. The project is scheduled to run from mid July to the end of August with the publication and distribution of the guide to follow. The guide will also be available on NCCC’s website coming soon.

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Compassionate Care Journal

A Publication of The Nebraska Coalition for Compassionate Care, PO Box 94714, Lincoln, NE 68509-4714

  April 2000, Volume 4.1 (Other newsletters include: Spring, 20001, Vol. 5.1;  Winter 2000-01, Vol. 4.4; November 2000, Vol. 4.3July 2000, Vol. 4.2; April 2000, Vol. 4.1; January 2000, Vol. 3.4; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

Delivery Into Life

Reflections of a Hospice Nurse by LaDonna VanEngen

The words were all so familiar. "Does she have all the signs and symptoms?" "How much longer will it be?" "Why is it taking so long?" "Is this as bad as it gets?" "Why do I have to have so much pain?" "Can you stay with me till it's over?"

These familiar words, which I usually associate with a death, were repeated while we were in the hospital with my daughter, Amy, and son-in-law, Ryan, having their first child. Assisting in the delivery of this grandbaby was much like assisting my hospice patients in their delivery into eternal life. In the dying process, we teach patients and families what to expect in the upcoming death. Similarly, my daughter had read every book she could get her hands on to learn what to expect in the upcoming birth. She and her husband had been to all the prenatal classes, but going through it, they needed reminders as to what was happening along the way.

The doctors had to induce Amy's labor because she was two weeks overdue. She was dilated to 8 centimeters (10 cm is complete and ready for delivery), but she was not able to push the baby through the birth canal. He was rotated posteriorly and we had to lay Amy on her side in contorted positions while she pushed to try to get him to turn. He was so large that his head got lodged behind her pelvic bone. Amy had to hang her arms over a bar and squat while she pushed. Thankfully, she is an athlete and had the physical strength and flexibility to do this.

In the end, the doctor put a vacuum device on the baby's head and helped to extract it. Then there were the shoulders to deliver! My daughter was concerned the baby would have big feet like hers, but she should have worried about him having big shoulders like his dad. At the end of a long, difficult labor, Amy delivered our beautiful, healthy baby grandson, Joshua Ryan, 9 lbs. 4 oz., 22" long.

 

 

 

 

When Joshua finally popped into this world and began to cry, they laid him in his mommy's arms. Wow! What a privilege to see! I was overcome with many emotions; relief, joy, gratefulness, love. It was as if the past flashed before me. I remembered the birth of my daughter, growing up with my parents, my grandparents, great grandparent. I saw my life as part of a great plan, a continuum. I heard my son-in-law talking to Joshua as he lay in the warmer. I watched as the baby responded to his voice. He recognized the voice that had been speaking to him since his conception and with whom he had already established a loving relationship. Ryan spoke to Joshua, "See, I told you we were not so bad, that we love you, and that you should come out and be with us."

It must be that way with our Heavenly Father as we are birthed into eternal life. We hang onto our present life, maybe being even two weeks "overdue", just holding on to that which we know and are familiar with. Some of those who are dying have a quick, non-eventful delivery into the next life. Some get stuck behind an obstacle and need to change their position so they can be delivered. Some have severe pain and need medical intervention with drugs. Some slip into the next life with no pain at all.

When we are delivered into eternal life, I believe our Heavenly Father will say, "I told you it would be beautiful, things are prepared for you." "I love you." "I'm glad you chose to come with me." We will recognize His voice because we already have that loving relationship with Him. We have listened to His "still small voice" since our creation.

Watching my grandson come into this life was a wonderful, unforgettable experience. I felt so privileged to be there at such a special time. That is how I feel in caring for hospice patients. It is a privilege to be with these people and their families at one of the most special times in their lives.

Now, I just want to know my Heavenly Father better and strengthen my relationship with him. He is my creator and I look forward to the day when He welcomes me to His world of heaven and says to me, as I said to my daughter, "Well done, I'm proud of you." 

LaDonna VanEngen is a member of the NCCC Operations Board

[NCCC members with similar experiences are encouraged to submit them for possible inclusion in future editions of the Compassionate Care Journal.]

Book Review:

DEADLY COMPASSION

by Rita Marker

Book Reviewed by Rosemary Anton [William Morrow and Co., Inc., New York, © 1993]

Rita Marker is a Plenary speaker for the May 4th, 2000 Convention

Being proven right is not always a satisfying experience. For Rita Marker, long time opponent of physician-assisted suicide, it should have been a triumph when one of her oldest and most effective adversaries did an about-face. Instead, Rita found tragedy as she saw her own prophesies come true in a painfully personal way. Deadly Compassion is her story of the euthanasia movement and its sinister consequences for society and for someone she loved.

Derek Humphrey oversaw the intentional death of his first wife when the struggle with her breast cancer went on too long. He then met and married Ann. Together they were outspoken advocates for the legal right to choose the time and manner of one's death, writing books, co-founding the Hemlock Society, teaching suicide techniques to others, and assisting Ann's parents in committing a double suicide.

Ann was diagnosed with breast cancer in 1989, but did not resolutely assure Derek that she would kill herself rather than risk becoming sick and needy, a burden. Within weeks Derek abandoned her. She soon found herself persona non grata at the Hemlock Society, where she was stripped of her job and informed that her medical insurance was at risk.

Ann turned to Rita, her former adversary, seeking and receiving support for the effort to fight the cancer and to live fully the years that were left to her. The months that followed were filled with drama, personal triumph, and profound loss, as the two women grew in friendship. Ann's long suppressed reservations about the Hemlock agenda grew stronger, and she revealed sordid secrets. But Rita's love and support could not undo the combined effects of a cancer-weary body and a heart broken too many times by multiple betrayals and abandonments. Ann Humphrey killed herself.

This is the story Ms. Marker tells, setting Ann's personal tragedy against a carefully researched background of other cases of "mercy killing" and the stealthy growth of the national and international euthanasia movement. This book looks beneath the mesmerizing language of autonomy, "self-deliverance," and benevolent killing. Marker reveals that behind the clamor for the legally assisted suicide is a barbaric invitation to abandon the ill, the disabled, and the frail elderly until, out of loneliness and fear, or out of a misguided sense of duty, these vulnerable people are pressured into suicide.

Some say that the "death with dignity" movement is less about people who are tired of living, than it is about people of whom the living are tired. America ignores the health and daily care needs of millions of the unemployed, the working poor, and the disabled. What kind of a people will we become if we decide that the progressive solution is to help them die, rather than to help them live with dignity. Rita Marker offers a chilling, all too possible preview.

Rosemary Anton is a lawyer and bioethicist and a member of NCCC.

Why I Joined NCCC by Denise Waibel-Rycek

As the chair of Good Samaritan Hospital’s Supportive Care of the Dying Initiative, I was asked to become a representative member on the NCCC Operations Board. My personal moral values and Christian beliefs also propel me to be as active as possible. I am by profession and experience a hospice/home health nurse and have been involved in the field for close to 14 years. Many families have opened their hearts and homes to include me in their last journey together. They have given me glimpses of undying love and thoughtless devotion through which Christ’s love is lived. Very few of these people would have chosen suicide, even if legally available. They preferred to live life to its fullest and enjoy every moment possible with the people who mattered most in their lives.

However, I have also seen that much more needs to be done to enrich the lives of these people and the communities around them. We need more compassionate professionals trained in the art of palliative care. We need communities who do not shy away from impending death but can see this last journey for what it truly is: an opportunity to share the journey and lift the burden; to come to grips with ones’ own mortality and to make plans; to peak at the heavens through the small glimpse given at the transition moment into a new life; to truly live the gospel of loving one another and respecting life.

The NCCC is an opportunity to make an impact. I have been impressed by the selfless devotion shown by the members not only fighting efforts to legalize assisted suicide, but also educating professionals and communities alike in how to support those with life threatening illnesses. The power of n=one, the power of the individual person, is truly present and making an impact. I feel privileged to be a part of this group.

Denise Waibel-Rycek is a member of the NCCC Operations Board

News Notes

Upcoming Education Opportunities...

Madonna Rehabilitation Hospital in Lincoln is sponsoring 3 seminars on Pain Management for physicians, nurses, pharmacists, nurse practitioners, physical therapists and other interested healthcare professionals. For information call Sharon Duffy at (402) 483-9595.

  1. Barriers to Effective Pain Relief", presented by Joan Beard, RN, BSN on May 9, 2000 at 6:00 p.m. at Madonna Rehabilitation Hospital. NO COST;
  2. "Pain: Assessment & Use of Analgesics", presented by Margo McCaffery, RN, MS, FAAN on June 1, 2000 from 8 am to 4 pm at the Cornhusker Hotel, Lincoln. Cost is $65.00;
  3. "Managing Pain in the Rehab Patient", presented by Barry Cole, MD, on June 23, 2000 from Noon to 1:00 pm at Madonna Rehabilitation Hospital. NO COST.

Oregon's Second Year: Flawed Data, Disturbing Trends

The Oregon Health Division (OHD) released data on the state's second year of legalized physician-assisted suicide on February 24. The report is available on the OHD's. or as a journal article: A. Sullivan et al., "Legalized Physician-Assisted Suicide in Oregon -- The Second Year," 342 New England Journal of Medicine 598-604 (Feb. 24, 2000).

Even the OHD admits that the information in this report is unreliable and incomplete:

  • All reports are from physicians and families personally involved (and the family member interviewed by the OHD was generally chosen by the physician involved). The OHD says that each doctor's report "could have been a cock-and-bull story." OHD Center for Disease Prevention & Epidemiology, " A Year of Dignified Death," CD Summary, March 16, 1999 [www.ohd.hr.state.or.us/cdpe/].

  • Doctors have an incentive to hide their abuses, because the OHD must report for further investigation any known case of noncompliance with state guidelines. "Because of this obligation, we cannot detect or accurately comment on issues that may be under reported." Id.

  • News media have revealed abuses ignored by the state's report: the Matheny case, where a family member actively "helped" a patient ingest lethal drugs (The Oregonian, March 17, 1999); the Cheney case, where an adult daughter described as "somewhat coercive" shopped around to find a physician willing to disregard her mother's dementia and aid her suicide (The Oregonian, October 31, 1999); and a recent "botched" assisted suicide where the drugs caused grave complications but did not end the patient's life [Brainstorm, March 2000]. While suicide advocacy groups knew about this last case, the OHD says it did not.

 

The annual number of assisted suicides increased from 16 to 27. (Last year's report claimed 15 cases, but missed one death occurring late in the year.)

Incomplete as it is, what the Oregon report does reveal is troubling:

  • The annual number of assisted suicides increased from 16 to 27. (Last year's report claimed 15 cases, but missed one death occurring late in the year.) Illnesses prompting a suicide decision have expanded beyond cancer to include debilitating conditions with an ultimately fatal prognosis -- AIDS (1 case, Lou Gehrig's disease 4), obstructive pulmonary disease (4).

  • Only 10 patients (37%) were tested for mental competency. Less than a third (31%) received a lethal prescription from the first physician they approached, but found another physician who provided the prescription. (The active involvement of suicide advocacy groups, found in 11 of the first year's cases, was not assessed the second year.)

  • All deaths were induced by an overdose of federally controlled substances (barbiturates). The drugs used for these suicides (43 since 1998) were all prescribed using a federal license from the U.S. Drug Enforcement Administration. Despite this commitment to the most powerful drugs, three patients took over 11 hours to die, and one took 26 hours to die.

  • As in the first year, physical pain took a back seat to other reasons for suicide. Physicians say "loss of autonomy" and "decreasing ability to participate in activities that make life enjoyable" were each cited by 81% of patients; worsening pain was cited by only 26%.
  • Families say almost half the patients (47%) cited becoming "a burden on friends and family" as a reason for suicide. Three patients (16%) were in Oregon's Medicaid program, a rationed system which funds assisted suicide while denying coverage for 171 treatments seen as less cost effective.

 

Coalition Activities. . .

May 4, 2000 -- 2nd End-of-Life Issues Conference

Two former Governors (Kay Orr and Ben Nelson) and current Governor Mike Johanns—all NCCC Advisory Board members—will each give a short address at the May 4 Conference "Affirming Life in the Face of Death". Governor Orr will give a welcoming address. Governor Nelson will offer his remarks at the 12:30 luncheon and Governor Johanns will give a closing address at 4:00 p.m.

General session topics are: Assisted Suicide: Economic Implications; Effective Communication at End of Life, and Pain and Suffering: The Role of Medicine--Improving Palliative Care.

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Compassionate Care Journal

A Publication of The Nebraska Coalition for Compassionate Care, PO Box 94714, Lincoln, NE 68509-4714

January 2000, Volume 3.4 (Other newsletters include: Spring, 20001, Vol. 5.1; Winter 2000-01, Vol. 4.4; November 2000, Vol. 4.3; July 2000, Vol. 4.2; April 2000, Vol. 4.1; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

NCCC to Co-Host Second Annual End-of-Life Issues Conference

The Clifford Hardin Continuing Education Center, 33rd and Holdrege Streets, Lincoln, will be the site of the upcoming May 4th "Affirming Life in the Face of Death" conference. The conference is being co-sponsored by NCCC, the Nebraska Hospice Association and the Nebraska Medical Association.

Guest speakers include Governor Mike Johanns and former Governors Ben Nelson and Kay Orr. Plenary Sessions will be conducted by Rita Marker, J.D., Eric M. Chevlen, M.D. and Walter Hunter, M.D.

"Assisted Suicide: Economic Implications" is the first conference topic and will be presented in the morning session by Rita Marker, J.D. Mrs. Marker will also present a breakout session on the topic of Advance Directives. She has been the Executive Director of the International Anti-Euthanasia Task Force since it began in 1987. She is the author of the critically acclaimed book, Deadly Compassion (1993), a compelling, persuasive, well-written and revealing discussion of both the personal and public sides of the euthanasia debate. She has made numerous presentations on the issue of euthanasia throughout the world and has frequently appeared on national television and radio through the US, Canada, England and Australia.

Dr. Eric Chevlen, M.D., will present the next plenary session topic, "Effective Communication at End of Life". Dr. Chevlen serves as the Director of Palliative Care at St. Elizabeth Health Center and is the Medical Director of Hospice of the Valley, Youngstown, Ohio. He is one of the few physicians in the U.S. to be certified by five specialty boards and specializes in the treatment of cancer and pain. In the forefront of opposition to euthanasia for over a decade, Dr. Chevlen has appeared frequently on the electronic media, including national television programs. He served as an expert witness for the prosecution in the People vs. Kevorkian in 1996.

Walter Hunter, M.D., will speak on "Pain and Suffering: The Role of Medicine--Improving Palliative Care". He will also present a breakout session on the topic: "Total Sedation: Euthanasia in Disguise?" Dr. Hunter is the Associate National Medical Director for Vista Care Hospice and served as immediate past chair of the Ethics Committee for the National Hospice Organization. He is also a member of the American Academy of Hospice and Palliative Medicine. Dr. Hunter is a frequent lecturer on the issues of palliative care and physician assisted suicide.

Breakout topics for the May conference include:

A) Effective Symptom Management (a.m. only),

B) Palliative Care Teams,

C) Identifying/ Addressing Depression Related to End-of-Life Care,

D) Total Sedation: Euthanasia in Disguise?,

E) Advanced Directives: Benefits and Perils,

F) Pain as a 5th Vital Sign (p.m. only).

The speakers for breakout sessions only are: Vaughan Cipperly, MD, Y. Scott Moore, MD, Mary K. Sheehan, RN, MSN, CRNH and Jean M. DeLio, RN BSN, CRNH.

Why I Became Involved with NCCC by John Carlson, Ph.D.

By vocation I am a professor of philosophy and, as is known, philosophers, beginning with Socrates, have had mixed success in the public forum. Moreover, my background includes no formal training in health care.

Nonetheless, when Greg Schleppenbach invited me to the initial organizational meeting for the Coalition for Compassionate Care, I saw this as an opportunity both to provide service to the community and to enhance my real-world experience in an area related to my teaching, in particular in biomedical ethics.

It has been my honor to be part of a truly ecumenical and interdisciplinary enterprise. We are physicians, nurses, hospice professionals, pastoral care givers, public policy lobbyists, and, yes, professors, working together in pursuit of an important element of the common good of all Nebraskans --the availability of appropriate, adequate, and truly compassionate care at the end of life. Two highlights of my service have been involvement in writing the explanatory comments accompanying the NCCC Vision Statement, and involvement in planning and presenting the Coalition's first conference, "Affirming Life in the Face of Death," last spring. Since I offered an executive summary of the latter in the June 1999 issue of this journal, I will here say only a few words about the former.

Anyone with experience on committees knows how difficult it is to find language agreeable to all parties. This is particularly the case when the parties come from diverse backgrounds and the topics are deeply related to our common life. But in the end it was for me a most edifying experience to collaborate on a document of such significance. May it inspire the Coalition's efforts for years to come!

Dr. Carlson was a founding member of NCCC Operations Board.

News Notes

1999 Conference Video and Audio Tapes

It has come to our attention that some individuals who ordered video or audio tapes from last year’s Affirming Life in the Face of Death conference may have not received the tapes they ordered. NCCC utilized the services of Behind the Scenes Video to record the conference and handle the sale of the tapes. It has since gone out of business. If you ordered tapes and did not receive them, please contact Greg Schleppenbach at 402-477-0204 or gregschlepp@alltel.net. Please indicate if you sent a payment to Behind the Scenes Video.

Openings on the NCCC Operations Board

The NCCC Operations Board has two openings for at large members that it would like to fill. The Operations Board meets on the last Tuesday of every other month (January, March, etc.) from 1:30 to 3:30 pm in Lincoln. The Operations Board is charged with the planning and execution of any and all activities that realize the stated goals and objectives of the NCCC.

The Operations Board has 6 committees:

  • Development and Fundraising,

  • Membership and Networking,

  • Communications and Media Relations,

  • Research and Education,

  • Legislation,

  • and Conference.

To see a current list of Operations Board members or NCCC's goals and objectives, check out the leadership section on our website.  If you want to be a part of this fun and dynamic Board, please contact Greg Schleppenbach at 402-477-0204 or gregschlepp@alltel.net.

A Valentine's Day Reflection

By Rosemary Anton, RN

She awakes early each day so that she arrives at the nursing home before the night shift departs, the better to get an accurate idea of how he was during the night. With the confused eyes of one not certain where he is or what is happening to him, but certain that he wants his wife nearby, he is waiting for her. She greets him with a kiss and some affectionate small talk as she begins her daily routine of checking to see that he is clean and comfortably positioned, that teeth are brushed, hair combed, face shaved, and a hundred other details attended.

Though ravaged in mind and body by a series of vicious strokes, he is not just a withered, stiff, fragile prisoner of the bed, he is her beloved husband of more than fifty years, the father of her six children, the companion with whom she shared life’s joys and sorrows, times of agreement and times of misunderstanding...endured, forgiven, bridged, and built upon.

They fell in love when they were young and life was fun and full of promise. As they (and their love) matured in their marriage, they knew not only the delights of picnics, dances, vacations, and romance, but also the demands of duty and the responsibilities of parenthood that called forth discipline, and gave solidity to their professions of love.

They performed a million small acts of love that overcame inconvenience, that chose the welfare of the other over the preference of the self, that did what needed to be done even if they didn’t feel like doing it. Did they know how much they were building trust...how deeply they were enriching their love...how strongly they were knitting the bonds of fidelity? She could not have known that she was practicing for the day when her love would need to carry her beyond his stroke-inflicted limits to reciprocate.

And so, for the 923rd day since he was cut down by cerebral hemorrhage, she comes and stays and watches over him, assisting the staff with his personal care, exercising his limbs, urging him through endlessly long meals, laundering his sweaters and polo shirts so he’ll always look his best. Children, grandchildren, and some friends willingly enter her routine and support her, but hers alone is the relentless, exhausting vigil that knows little outside distraction.

One would have understood had she backed off a bit after the first few months. It's not only the punishing physical routine, or the boring repetition or outright unpleasantness of many of the tasks, or the anger and frustration when a professional caretaker has neglected him, but the sadness and heartache of seeing him so diminished, that she might understandably seek to avoid.

And yet, faithfully, she comes. And every night before she goes, she blesses him and gently, tenderly, lovingly, kisses him good night, sorry more for him than for herself, as she returns home alone to sleep and await the 924th day. She does it for love.... and he knows it.

 

I give thanks for pink valentines and lace-trimmed hearts, for chocolate tokens of affection, for surprises and giggles, for the gift of human sexuality and the thrill of romance. But I know that these things would be empty rituals of loneliness if they were not expressions of a deeper yearning of the human heart...the desire to be loved by one who will always be there for us, who will love us faithfully and without conditions no matter how vulnerable we may become or how unlovable we may sometimes feel.

I thank you, God of Faithfulness, that you are such a lover, one whose covenant remains unbroken, one whose love poured out in the surrender of life itself, one whose spirit is with us always.

And more still do I thank you for those persons in our lives who love so constantly, so unselfishly, so faithfully that they not only witness to your love but channel it to us. They not only love us, they teach us how to love.

Thank you for those who love even when love is hard, who are faithful even when fidelity exacts a harsh price. Thank you for every parent who rises at night to feed a hungry baby, for every friend who listens empathetically to another's troubles, for every stranger who spends time and effort to search out the owner of the lost wallet, for every co-worker who stays late to help another with a project, for every child who spends her pocket money on a gift for her parent, for every spouse who cheerfully runs errands to help out his mate.

Help me learn to love with equal vigor and power. Help me to do the little acts of love that will strengthen me to do the bigger, tougher ones. May I be part of a network of love that assures people that they are loveable and will not be abandoned. May I learn to so live my days, that my life itself will be a Valentine.

 Rosemary Anton is a member of the NCCC Operations Board

Editor: John Soukup Page Layout & Website Administration: Rhonda Horner-Bohaty

Editorial Board: Jos Welie, J.D., Ph.D.,

Joyce Gibbs, CNHA, Scott McPherson, M.D., Greg Schleppenbach

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