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Newsletter 2001

Compassionate Care Journal

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

July-August 2001, Vol. 5.2; Other newsletters include: Spring 2001, Vol. 5.1; Winter 2000-01, Vol. 4.4; November 2000, Vol. 4.3; July 2000, Vol. 4.2; April 2000, Vol. 4.1; January 2000, 3.4; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

Taking Action: You Can Make a Difference

In one way or another, each of us has the capability to help to improve the lives of family caregivers. Whether you are a nurse, physician, social worker or clergy member; whether you run a business that employs 5 people or 500; whether you are an educator or a policy maker, you CAN improve the policies, programs and practices that affect family caregivers. The Hospice Foundation of America and Last Acts offer the following suggestions for actions that can make a difference for family caregivers and those for whom they care.

These action steps can be taken today; some may take more time. All these action steps can are based on the enormously important idea—inherent in the hospice philosophy—that the patient and family are an essential part of the healthcare team and must always remain at the center of care.

  1. Learn more about the Administration on Aging’s National Family Caregiver Support Program and how it affects Nebraska and local Area Agencies on Aging. Make sure the caregivers with whom you work are getting the most out of these programs.

  2. Go to the Administration on Aging’s Web site at www.aoa.gov/carenetwork.

  3. Find out about existing employee benefits at your workplace that help family caregivers including sick leave, hospice coverage, bereavement leave, flexible spending accounts, and flexible scheduling. Work with your Human Resources Department to add new benefits or re-structure existing ones.

  4. Get a copy of the Last Acts’ Workplace Tool Kit with ready-to-use policies, benefits and activities for your employer by contacting Barksdale Ballard and Co. at lastacts@aol.com.

  5. Contact your Senators and Representatives and tell them about the valuable work of family caregivers and about their needs. Send an e-mail, make a call encouraging them to sponsor or support legislation that will improve family caregiving.

  6. For contact information, go to: http://clerkweb.house.gov/106/mbrcmtee/members/teledir/members/mcapdir.htm or call the Congressional switchboard at 202-225-3121.

  7. Conduct a staff training seminar about the needs of family caregivers and how professionals can help.

  8. Contact HFAA at 800-854-3402 to purchase books, videotapes, and newsletters about Caregiving and Loss: Family Needs, Professional Responses.

  9. Organize a Caregiver Fair at your workplace, place of worship, or local university to educate family caregivers about the resources in your community.

  10. Read about organizing a Caregiver Fair on HFA’s Web site: www.hospicefoundation.org/caregiving.

  11. Join local and state initiatives focusing on caregiving and end-of-life care.

  12. Find out about Community-State Partnerships through the Midwest Bioethics Center at www.midbio.org. Also, contact the Nebraska Coalition for Compassionate Care at (402) 477-0204 or www.nebrccc.org.

  13. Conduct on-going assessments to determine the needs of your patients and family caregivers, remembering that a critical part of assessment is careful listening.

  14. Go to: www.hospicefoundation.org/caregiving to find information about assessment tools.

  15. Encourage family caregivers to acknowledge and identify their strengths and challenges and to draw upon their own networks to support them.

  16. Ask families to create a list of people on whom they can rely for specific support (e.g., those who are good listeners, good doers, respite providers).

  17. Help family caregivers identify formal support groups, respite programs and bereavement support by contacting groups such as local hospice programs, chapters of healthcare organizations, and the area agency on aging.

  18. Compile a Resource Directory for your community. Find local sponsors to help make it widely available to the families with whom you work.

  19. Recognize the ways that culture can affect access to care, support, and caregiver’s expectations.

To find links and resources on diversity and multi-lcultural issues, use the search engine at the Last Acts Web site: www.lastacts.org. 

The New Dutch Euthanasia Law

A Critical Commentary by

NCCC Operations Board Member Jos Welie MMEDS, JD, PhD

On April 10, 2001, The Netherlands became the first country to have ever legalized euthanasia.1 Although the state authorities had tolerated the practice of euthanasia for several decades, it had always remained subject to legal control. Soon it will be possible for physicians to euthanize their patients without having to defend their actions to a court of law.

The Dutch definition of euthanasia is somewhat unique in that it makes explicit reference to the request of the patient: "Intentional shortening or termination of life at the explicit and free request of the patient." Thus euthanasia is not synonymous with "mercy killing." If a physician were to end the life of a patient without the patient’s explicit and free request, this would be classified as "non-voluntary termination of a patient’s life." These definitions are used for two reasons. First, according to Dutch Penal Code (which dates from 1886), non-voluntary termination of a patient’s life would constitute "murder." After all, the death of the patient is intended as well as premeditated. In one of the most recent court cases — about which more will be said later — the physician, Dr. Van Ooijen, was found guilty of murder because he had ended the patient’s life at the request of family members, although there was no indication at all that the patient herself had wanted euthanasia.

If, on the other hand, the patient does request euthanasia, a different article from the Penal Code applies. Article 293 states that "a person who terminates the life of another person at that other person’s express and earnest request is liable to a term of imprisonment of not more than twelve years or a fine of the fifth category." Thus, the request of the victim does not take away the criminal nature of the act. Even though somebody explicitly and freely asks to be killed, even though the killer is moved by pity or a mistaken sense of duty, the killer is still liable to imprisonment.

In addition to art. 293, the Penal Code contains a prohibition on assisting in suicide. Art. 294 states: "A person who intentionally incites another to commit suicide, assist him therein, or provides the means thereto, where the suicide ensues is liable to imprisonment of not more than three years or a fine of the fourth category." There is an important legal difference between "murder at the request of the patient" and "assistance in suicide." In the former, the physician commits the final act of ending the patient’s life; in the latter, the physician provides means or otherwise assists, but in the end the patient takes his or her own life.

It should be pointed out, however, that by far the most cases of medical termination of life in The Netherlands are euthanasia cases (approx. 90%) rather than assisted suicide cases (approx. 10%). This in and by itself raises some interesting questions, since most of the euthanized patients would have certainly been able to take their own life (with or without medical help). Why is it that these patients prefer a physician to take their life? And more importantly, why is it that most physicians readily agree to take those lives, instead of limiting their involvement to mere assistance, insisting instead that patients take final responsibility for their actions?

As pointed out, the aforementioned articles in the Penal Code date back to 1886 and they remained unchanged until 2001. On April 10, the Upper House of Parliament passed a bill that had been accepted by the Lower House several months earlier. The Bill is expected to take effect before the end of this year. The bill states that a physician - why only a physician? - is not liable to punishment if he violates either article 293 or 294 and does so while abiding to a series of cautionary guidelines specified elsewhere in the law.

In order to appease foreign critics, The Dutch Government takes great pains to emphasize that this bill has not legalized euthanasia and assisted suicide; instead, the bill grants immunity against punishment for physicians who commit euthanasia or assist in suicide. It is true that the original text of articles 293 and 294 has remained unchanged, such that "murder at the victim’s request" and "assisting in suicide" remain crimes.2 This means that if a physician euthanizes his patient, he still violates §1 of article 293 and cannot be acquitted of the charges brought against him. However, since his actions are not punishable according to §2 of the same article, the case will be dismissed. In other words, the net result is exactly the same.

Of course, the physician who commits euthanasia in a careless and sloppy manner or otherwise does not abide by the standards of practice remains liable to punishment. But there is nothing special about that. Any physician who practices medicine in a careless or sloppy manner, thereby causing harm to patients, is liable to legal retribution.

Earlier I stated that a case against a physician who commits euthanasia will be dismissed under the new law, provided he abides by the specified practice standards. In fact, this is not fully correct. Only the Court can dismiss a case, or a prosecutor if he foresees that the Court would dismiss the case anyway. This is what has happened over the past two decades. Virtually all cases brought against euthanizing physicians were dismissed by the prosecutors, and those that actually came to Court were generally dismissed by the Court. Only a small minority of physicians was actually deemed liable to punishment- but then punishment was suspended or not imposed at all. Still, in all these instances, the legal authorities retained the power of control. But the new bill de facto removes that power. Instead, five non-legal regional committees (consisting of a physician, attorney and ethicist) will examine all reported cases of euthanasia. If the committee finds that a physician has abided by the practice standards, the case will not be forwarded to the legal authorities. In short, there will be nothing to dismiss because there simply will not be a formal case brought against the euthanizing physician.

Dutch advocates of euthanasia believe this procedural answer will be an effective strategy to keep the practice of euthanasia from going underground, thereby precluding any and all forms of control. It is, however, very dubious that the present system will be effective.

First, the new bill formalizes what had been established procedure for many years. Yet only half of the actual number of euthanasia cases typically is reported, and that number has only been going down instead of up! It is quite unlikely that this decrease reflects a decrease in the actual incidence of euthanasia. Instead, it probably reflects an increasing unwillingness of Dutch physicians to be controlled at all. The present bill will not change that arrogant attitude.

Second, there are only 5 regional committees. At the present reporting rates of approximately 1500 cases per year, that means each committee must review 300 cases per year, or about 7 cases each work week. Since these committees operate only one day a week, there is about one hour to review each case! This ridiculous number makes clear that it would be impossible for the committee to carefully examine each case in-depth and determine that the patient was truly competent, informed and not pres-sured by family members or health care providers; that her request for euthanasia was sincere, authentic, and not in fact a desperate call for compassion and help; that the patient’s condition was beyond prospect and all alternatives of good end-of-life care and symptom-relief were exhausted; and that the patient’s suffering was truly unbearable and lasting.

And then there remains the question what will happen with those cases that are so patently in violation of the stated guidelines that the regional committees will actually discover them in the allotted hour. These cases will be referred to the prosecutor who then has the power to bring a formal charge against the physician. How will the courts deal with such cases?

One indicator of what will happen is the recent case mentioned earlier. Dr. Van Ooijen - the same physician who some years ago made the TV documentary about his committing euthanasia - ended the life of a patient without any request from the patient. Moreover, many of the other practice standards for euthanasia were violated. Consequently, the Court of Amsterdam on February 21, 2001 found the physician guilty of murder. Furthermore, he had failed to bring forth any persuasive justifications or other mitigating factors for his actions. However, the Court concluded that the physician "had been very concerned with the patient, acted honorably and conscientiously, and in accordance to what he believed would be in her interest", and therefore did not impose any punishment at all, not even a suspended punishment!

Jos VM Welie, MMedS, JD, PhD, Creighton University Center for Health Policy and Ethics

1. The complete text of the Bill in English translation can be found at the webpage of the Dutch Ministry of Justice: http://www.minjust.nl:8080/a_beleid/fact/suicide.htm

2. Art. 294 was changed in one regard. Physicians who assist in suicide or provide the means to do so are no longer liable to punishment, but they remain liable if they "incite" a patient to commit suicide. This raises the interesting question what "inciting" means. If a physician "recommends" to a patient that she commit suicide - as some advocates of euthanasia have propose physicians should do - does that amount to "inciting" someone to suicide?

The Pain Team by John Soukup

At first glance, when you see the name, "The Pain Team," you picture the latest WWF wrestlers to hit the ring or a football team with a crushing defense. In reality, this "team" does what it can to ease pain! Kurt Clyne, the Director of Pharmacy at St. Elizabeth Regional Medical Center in Lincoln, is a part of this group of doctors, nurses, physical therapists — anyone interested in pain management.

"We've been meeting monthly for the last 7 or 8 years," said Clyne. "For some of us, the purpose of the formation of the pain team was a desire to do a better job of pain management. A joint commission for accreditation of hospitals also requires an aggressive approach to this area of medical care."

Clyne said nationwide, there is a lot of attention focused on doing a better job of pain management. "We felt the need to form this team and work on the pain management issue collectively. There's a tendency, especially in hospitals, to work individually in each department and not hook up with other departments in order to provide the best possible care for the patient. The focus of the Pain Team is to work in a collaborative effort."

Through those collaborative efforts, Clyne explained they are able to initiate change, "That may involve a systems change in a hospital, forms change, and of course, on-going education about pain management issues"

Clyne said members of the Pain Team are consulted regularly by physicians and other staff on pain related issues to do consultations or even participate in a pain clinic with other team members.

"When I consult with patients to see what could be done to improve pain management from a pharmacological perspective, I emphasize to that person that, with all that is going on with their treatment, I am only going to concentrate on their pain and nothing else. This is very important to the patient, especially if their pain is acute or chronic."

Clyne believes there are similar groups like the Pain Team, established in other hospitals throughout the state. "From a regulatory standpoint, hospitals need to demonstrate what they are doing in terms of pain assessment, such as meeting patients' needs in respect to pain and demonstrating positive outcomes (i.e., showing that you're doing a good job). A Pain Team is one of the best ways to meet those requirements."

[We welcome additional articles from pain management teams from other healthcare facilities. E-mail us at: gregschlepp@alltel.net.]

News Notes

PERSISTENT PAIN IN NURSING HOME RESIDENTS

(Brown Medical School, Providence, RI)

More than 1.5 million people in the United States reside in nursing homes and studies have shown an estimated 43% of adults 65 years and older will enter a nursing home prior to death. In 1999, a national pain survey of nursing home residents was completed within 60 days of April 1. The term "persistent pain" indicates residents with pain at an assessment around that time who were also reported to be in daily moderate or excruciating pain at a second assessment, 60 to 180 days later. The results found that nationwide, 14.7% of residents in a nursing home for 2 assessments were in persistent pain and 41.2% of residents in pain at first assessment were in severe pain 60 to 180 days later. This rate varied from 37.7% in Mississippi to 49.5% in Utah.

As reported in Nebraska at the first time period in the assessment, of 196 persons residing in a nursing home, 94 persons were noted to have experienced pain. Of those with pain at the first assessment, 7.4% had had excruciating pain in the past week. The persistent pain quality indicator focuses on those persons in pain at the first assessment and remained in the nursing home for a second assessment at least sixty days later.

  • 68 persons (of the original 94 reported) were in pain at the first assessment and were in a nursing home for a second assessment.
  • 25 of the 68 (36.8%) had worsening pain or their pain remained at a severe level Nationally, the rate is 41.4%

The authors of the study believe that state and national results under-estimate the true pain burden experienced by nursing home residents because the data were reported by nursing home staff rather than by patients. States in which pain is not adequately assessed may report lower rates of persistent pain. Although facilities in states with higher rates of reported pain might be doing a better job of recognizing pain, nearly half of these residents were apparently not afforded adequate palliation. The high rate of persistent pain is consistent with previous research noting that pain is often not appropriately treated in nursing home residents. Untreated pain results in impaired mobility, depression, and diminishes quality of life. These population results indicate that pain control represents an often neglected need of this vulnerable population.

Union House to Be Home for Terminally-ill Residents

Reprinted from the Lincoln Journal Star, May 2001

Project developers and community leaders gathered on the northwest corner of 78th and Pioneers Boulevard last May to break ground for Lincoln’s first assisted-living home for the terminally ill.

The Union House, owned and operated at Eastmont Towers, will be home to people of all ages facing life-limiting situations. The six-bedroom home is scheduled for a construction start-up this summer and a completion date next spring.

The Union House will offer all the amenities of a home environment including a private bath off every bedroom. Family, dining, kitchen, children’s playroom and a living room with a fireplace will afford the resident and family or friends the ability to share together as they face the end-of-life experience.

"This will provide a quality setting for terminally-ill people whose special needs need to be taken care of," Beth Nelsen, director of nursing for the Eastmont Towers community, said in a brief ceremony before the first shovel of dirt was turned. "The residents here will be surrounded with love and caring people.

The charitable gifts through Lincoln businesses have enabled this dream to become reality, said Dr. Bob Chitwood, executive director for the Eastmont Towers. The name "Union House" is in honor of the generous contribution of Union Bank and Trust, a key contributor to the home’s construction.

"It will be a dignified place for people to be," said Hub Hall, who donated the land. The Saint Elizabeth Foundation, in cooperation with the Dillon Foundation’s charitable gift, will equip the home.

"We’re looking at care for the sake of comfort and support, not care for a cure," said LaDonna Van Engen, program coordinator for the Saint Elizabeth Hospice program (and an NCCC operations board member). "This staff will focus on end-of-life issues for patients and their families."

Last Acts Family Committee Produces Document to Help Caregivers

Last Acts® is a national education and communications campaign to improve care and caring near the end of life. The Last Acts Family Committee recently developed a comprehensive resources guide to assist family caregivers find the information they need to better care for those facing the end-of-life. The guide, called Last Acts Consumer/ Family Resources for End-of-Life Care, contains information from numerous organizations offering a variety of caregiver resources including books, videos, web sites and brochures. Each entry includes the resource title, producing organization, and information about how to order that particular item.

Many of the materials appearing in this resource guide were tested through a series of caregiver focus groups that took place in multiple cities across the

country. The resources included in Last Acts Consumer/Family Resources for End-of-Life Care received high quality feedback on style, appearance and substance.

The guide resulted from an initial caregiver resources audit conducted by the Family Committee, one of Last Acts’ 11 topic-specific committees. The audit pulled together a large list of similar materials available to assist the family caregiver. Spending a great deal of time sorting through this vast amount of resources, the Committee initiated a series of focus groups to help evaluate what types of materials resonate best with caregivers. Last Acts Consumer/ Family Resources for End-of-Life Care is a collection of materials discovered within the larger audit that matched these family caregivers’ requests.

To view the guide, a PDF file is available on the Last Acts web site at http://www.lastacts.org:80/files/publications/familyresources.pdf. To order the guide, send an email to lastacts@aol.com and type "Family Compendium" in the subject line or contact Kim Martin with Barksdale Ballard & Company at 703/827-8771. In your e-mail request, be sure to include your name, mailing address, and the number of copies you would like to receive. Copies of the guide are free and Last Acts can fulfill larger requests at this time.

The Last Acts Family Committee is a part of the larger Last Acts Campaign committed to improving care at the end of life. To learn more about Last Acts and the Family Committee, visit the web site http://www.lastacts.org

Euthanasia & Asst. Suicide: Oregon's Third Year: Details and Concerns

On February 22, the Oregon Health Division (OHD) released its third annual report on legally permitted physician-assisted suicides in the state.

These annual reports provide no independent assessment of complications or possible abuse of the state's guidelines, and are not designed to do so. They are based primarily on accounts by the prescribing physicians. The OHD says it must report for further investigation any now known case of noncompliance with the state guidelines, so "we cannot detect or accurately comment on issues that may be under reported." In short, the doctors filing reports have an incentive to hide their mistakes or deliberate violations of the law. Indeed, as far as the OHD knows, each doctor's report "could have been a cock-and-bull story." OHD Center for Disease Prevention & Epidemiology, "A Year of Dignified Death," DC Summary, March 16, 1999 [www.ohd.hr.state.or.us/cdpe/]. With these caveats in mind, the report finds:

  • Twenty-seven Oregonians died in 2000 after ingesting lethal overdoses legally prescribed by their physicians. This number was 27 in 1999 and 16 in 1998. The total number of lethal prescriptions written was 39 (compared to 33 in 1999 and 24 in 1998); some patients died of their underlying illness or were still alive when the year ended. Prescribing drugs for the 27 deaths in 2000 were 22 different physicians.
  • Each case seems to have used controlled substances, requiring a federal prescribing license form the Drug Enforcement Administration. In at least 96% of cases, the

barbiturate secobarbital was used. While one patient regurgitated some of the lethal dose, all patients died 5 to 75 minutes after ingesting the drug.

  • A startling 63% of these patients (compared to 26% in 1999 and only 12% in 1998) cited fear of being a "burden on family, fiends or caregivers" as a reason for their suicide.
  • The most commonly cited reason for suicide was a concern about "loss of autonomy" (cited by 93% in 2000, compared to 78% in 1999). 96% cited several concerns as contributing to their decision.
  • 30% cited concern about "inadequate pain control" as a reason for their death (compared to 26% the year before), despite claims by the Oregon law's defenders that legalizing assisted suicide has improved pain control and should have reduced or eliminated such concerns.
  • Also rising is the percentage of victims who were married (67%, up form 44%) and who were female (56%, up from 41%). One can surmise that some older married women in Oregon are receiving the message that they are a "burden" on husbands and other relatives, and then opting for assisted suicide.
  • The patients' median age was 69 (compared to 71 in 1999). 78% had cancer (compared to 63% in 1999) and 22% had other illnesses.
  • The patients were highly educated: "Patients with a college education were eight times more likely to participate than people without a high-school education."
  • The median time between a patient's initial request for assisted suicide and his or her death by overdose also decreased markedly, from 83 days to 30 days.

From Life at Risk, Jan/Feb. 2001, Vol. 11, No. 1.

FAITH PERSPECTIVES

What the Bible Says About the End of Life

Is there an example of assisted suicide in the Bible?

There is an account of reported voluntary euthanasia (in which one person asks another to kill them, ostensibly in order to alleviate the first person’s suffering) involving King Saul and an Amalekite (2 Samuel 1:1-16). The unnamed Amalekite tells King David that he killed Saul at Saul’s request, as Saul was wounded in battle. David’s response is to kill the Amalekite for touching God’s anointed. If euthanasia were a beneficial practice, David would have rewarded the Amalekite, not sentenced him to death..

How should Christians respond to the fear (or reality) of pain and suffering?

Deuteronomy 31:6,8 "Be strong and courageous, do not be afraid or tremble..., for the Lord your God is the one who goes with you. He will not fail you or forsake you...And the Lord is the one who goes ahead of you...Do not fear, or be dismayed."

Romans 8:32, 35,37 "He who did not spare His own son, but delivered Him up for us all, how will He not also with Him freely give us all things?...Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? But in all these things we overwhelmingly conquer through Him who loved us."

Psalm 23:4 "Even though I walk through the valley of the shadow of death, I fear no evil, for Thou art with me..."

Philippians 4:11,13,19 "...for I have learned to be content in whatever circum-stances I am...I can do all things through Him who strengthens me...And my God shall supply all your needs according to His riches in glory in Christ Jesus."

Does suffering have spiritual value? Can God be glorified in how we respond to suffering?

Philippians 3:10 "That I may know Him, and the power of His resurrection and the fellowship of His suffering, being conformed to His death’ in order that I may attain to the resurrection from the dead."

2 Corinthians 4:7 "But we have this treasure in earthen vessels, that the surpassing greatness of the power may be of God and not from ourselves."

2 Corinthians 4:16-18 "Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen, for the things which are seen are temporal, but the things which are not seen are eternal."

But it’s my body. Don’t I have a right to choose when I die?

1 Corinthians 3:16,17 "Do you not know that you are a temple of God, and that the Spirit of God dwells in you? If any man destroys the temple of God, God will destroy him, for the temple of God is holy and that is what you are."

1 Corinthians 6:19,20 "Or do you not know that your body is a temple of the Holy Spirit who is in you, whom you have from God and that you are not your own? For you have been bought with a price: therefore glorify God in your body."

Is it acceptable for a Christian, who is terminally ill, to refuse available technology in order to let nature take its course and bring about a natural death? Yes.

Ecclesiastes 3:1,2 "There is an appointed time for everything. And there is a time for every event under heaven--a time to give birth, and a time to die."

Psalm 116:15 "Precious in the sight of the Lord is the death of his godly ones."

Psalm 139:16 "And in Thy book they were all written, the days that were ordained for me."

Do the acts of assisted suicide and euthanasia deny God the opportunity to demonstrate His healing power?  Yes.

Matthew 8:16 "And when evening had come, they brought to Him (Jesus) many who were demon-possessed and he cast out the spirits with a word and healed all who were ill."

James 5:16 "Therefore, confess your sins to one another and pray for one another so that you may be healed. The effective prayer of a righteous man can accomplish much."

From: Citizen Link, a website of Focus on the Family, 1998. Scripture from New American Standard Bible, 1977.

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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Compassionate Care Journal

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

Spring 2001, Vol. 5.1 Other newsletters include: July-August 2001, Vol. 5.2; Winter 2000-01, Vol. 4.4; November 2000, Vol. 4.3; July 2000, Vol. 4.2; April 2000, Vol. 4.1; January 2000, 3.4; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

Reflections on PBS Series "On Our Own Terms"

Excerpts from the Supportive Voice Newsletter

by Douglas K. Miller, MD

In the first episode of the PBS series entitled "Living with Dying," Bill Moyers asks, "What do we owe the dying?"

I believe that we owe them our very best efforts to provide solace and comfort in the very scary confrontation with their own bodily demise. Not just physically, but emotionally and spiritually as well. To maximize our ability to help, I believe that we clinicians have two main tasks. First, we need to address the issues of death in our own lives--the deaths of our patients, the deaths of our loved-ones, and our own deaths. Second, we need to use our experiences in ways that help our patients without falling into the trap of assuming that the only way to come to terms with death is the way that worked for us. I do believe that the concept of "to love well is to live forever" can be comforting to many, and perhaps almost all, of our patients with life-threatening illnesses. But there is no reason to stop at one paradigm that provides solace. Let us find others as well.

by Mark Moore

While watching Bill Moyer's provocative "On Our Own Terms," a look at death and dying in America, I kept thinking, "One day, this will be me." "Not good," I thought, "not good at all." I felt trapped. Trapped by the law. Trapped by the medical profession and by the government. I kept thinking, "Why are directives ignored? What sense does it make to pay an institution instead of a family? Why has the legal system forced the physician to choose between his Hippocratic oath and the patient's wishes? And, by the way, who's responsible for this mess?" I was upset and I really wanted to point an accusing finger at someone. And, in the end, I did. I pointed it at myself.

Great advances in medicine and science have fooled us all--the families, the government, and the medical profession--into believing that science can fix anything. Just throw enough technology and medicine and money at it and we can somehow avoid our inevitable final journey. Sadly, we appear intent on isolating ourselves from death and dying, as if it has nothing to do with the rest of our lives. Though that may be a comfortable point of view, this isolation has handed over the decision making, not to the dying and their families, but to the courts and the physicians. The PBS stories also pointed out quite clearly that, by avoiding these issues before the fact, we leave ourselves unprepared, spiritually and emotionally, to face life's final challenge.

"On Our Own Terms" took a brave first step in opening a public conversation with death and it's end-of-life experiences. Continuing that dialogue might help prepare us to support family members and friends in life's final hurdle. It could guide us in how to develop laws regarding end-of-life issues that make moral and ethical sense. It may help us to make more honest and realistic decisions, before the fact, regarding health care and medical treatment. And, with luck, it just might leave us better prepared to face our own final hurdle

by Sr. Elizabeth Howe, OSF, MD

As we reflect on the PBS series "On Our Own Terms," each of us hopes for a good death. We also have that wish for every person we love. The series' narratives illustrated so well that life and death on this earth are a necessary part of the journey. Even though death is often pushed to the margins in our contemporary life and can be an inconvenient intruder in a culture of health and longevity, Americans are learning the concreteness of giving and receiving care in what is now termed "palliative care." We identified with the beautiful characters in the four-part series as they struggled through the stages of dying in our pragmatic culture where death is often considered a failure. The story of Bill Bartholome, MD, the dedicated pediatrician, was particularly poignant as he came to terms with all the ramifications of a good death--hovering on the threshold of the unknown. Even as he recorded his days, he integrated the light and darkness of his feelings and insights. We discovered the spirit of Bill's wife, Pam Roffel Dobies, his chief caregiver, who displayed a wonderful spirituality of care--a tough, earthy, and human way of love. In spite of the challenges on the way, this brave pediatrician died with beauty, grace, and relationship.

by Libby Bowers, RN, BSN

I viewed part one of the Moyer's series, "Living With Dying," with particular sensitivity to the Missouri pediatrician, Dr. Bartholome, who confronted his cancer diagnosis proactively by affirming life and regarding dying as a natural process that is profoundly personal. In reflecting on my work with those who have a life-threatening illness, this segment of the Moyer's series reframed my approach to caring for the dying and their family.

The concept of dying as a personal experience has refreshed my practice to assist families to create a personal experience regardless of the location. In the ICU, for example, lines and tubes invading the body of a critically ill individual and IV pumps, side-rails, ventilators, and other monitoring equipment act as a barrier between the dying individual and his family. Despite the impersonal environment of the ICU, there is an opportunity to create a uniquely personal dying experience for the patient and his family. My goals as a health care provider are to transform the sterility of the ICU room into an environment that respects and honors the cultural and religious beliefs and practices of the family having a uniquely personal dying experience. This may be best accomplished by removing or diminishing the barriers between patient and family.

by Judy Kaskel

When I read about people living with a life-threatening illness, I never feel as if they're talking about me. Maybe it's because my eight chemotherapy treatments went very smoothly, with very few side effects. (I've had a wonderful sense of well-being during the whole year, as a matter of fact!) I was very curious, however, about this four-part series that dealt with death and dying issues and was very glad that I had watched it. I found it to be very informative on how hospice and palliative care are trying to make dying the natural end of living and a life-affirming experience for the patient as well as the family, absorbing the emotions of death, while emphasizing comfort care. Program  #2 featured Sloan-Kettering's innovative program where morphine-like drugs reduce the physical pain by as much as 95-98 percent. Patients are relieved from depression and exhaustion as well, and can now feel that they are in control. Their dignity is being honored and they can now face these frightening experiences with trained nurses, social workers, chaplains, and volunteers. The communication now between family members and friends is so much more meaningful and comforting for everyone. Also in program #2, one of the physicians mentioned that in nine years of medical school she had never had a class on pain care! Hopefully, this is changing in schools today. In program # 4, the question of "who comforts the doctor, the hospice worker, and the nurse" arose--an eye opener to the rest of us.

Will Oregon Law's Third Year Be Its Last?

From Life at Risk, "A Chronicle of Euthanasia Trends in America"

As Oregon issued a report on its third year of legalized physician-assisted suicide, expectations grew that the Bush Administration may soon act to prevent use of federally controlled drugs for this state's unique experiment in lethal medicine.

Since 1998, due to a legal opinion by U.S. attorney general Janet Reno, Oregon physicians have used their federal prescribing licenses from the Drug Enforcement Administration to order controlled substances - usually secobarbital - for use in terminally ill patients' suicides. However, new attorney general John Ashcroft was an outspoken critic of the Reno opinion when he served in the U.S. Senate. He authored a 1997 letter to Reno signed by seven other Senators urging a contrary opinion, and criticized her final ruling as "bending the law" to facilitate assisted suicide. George W. Bush also criticized the ruling and endorsed a bill to reverse it, the Pain Relief Promotion Act, during the presidential campaign.

The Oregon Health Division's third annual report on operation of the "Death with Dignity Act," released February 22 and summarized in the New England Journal of Medicine the same day, was said by the law's supporters to offer "compelling evidence" that the Act "has given Oregon citizens comfort and control at the end of their lives." Said Estelle Rogers, executive director of the Death with Dignity National Center: "Oregon is a model for the nation, a place where doctors and patients alike approach end-of-life issues with due seriousness and compassion. We believe it's time for President Bush and the Attorney General to do the same" [U.S. Newswire, 2/21/01].

But the same report hailed by Rogers as "a third year of good news" was said by a prominent critic of Oregon's law to confirm that "the assisted-suicide experiment has failed." Dr. Gregory Hamilton of Physicians for Compassionate Care says that Oregon officials monitoring the practice of assisted suicide "have neglected to report meaningful results." Case reports are chiefly self-reporting by the physicians involved, and no effort is made to find "complications" or problems not reported by those assisting the suicide [PCC press release, 2/21/01].

The Oregon Health Division reported 27 deaths from physician-assisted suicide in 2000, the same number as in 1999. The only case it found of incomplete compliance with the Act was one in which a physician submitted a consent form signed by one witness instead of two. Dr. Hamilton notes, however, that the chief case of assisted suicide to receive extensive news reporting in 2000 showed more irregularities than this.

The case of Joan Lucas received feature-length coverage for two days in her local newspaper in June. Suffering from Lou Gehrig's disease, she originally tried and failed to commit suicide by herself on January 16 - but she and her family soon found more expert "assistance" and she died on February 3. The doctor who wrote the lethal prescription says he requested a psychological evaluation "because I wanted to cover my ass" - and that evaluation consisted of a mailed "personality inventory" questionnaire which the family filled in together, "cracking up" with laughter as they read some of the questions. While the survey showed signs of depression, the psychologist felt that depression was a "normal response" to Joan's terminal illness and so approved the suicide request [Medford Mail Tribune, 6/25/00 and 6/26/00].

The state's official report shows no sign of such problems. It does indicate that only 19% of the patients in 2000 received any psychological evaluation (compared to 37% in 1999). And while 26% of the patients cited a concern about being a "burden" on others as a reason for their suicide in 1999, that figure jumped to 63% in 2000.

Why I Became Involved in NCCC by Ed Holbrook

The Nebraska Coalition for Compassionate Care, in my opinion, represents the best hope we have to bring reforms to how we as society respond to the needs of those among us who are terminally ill in a way which provides dignity and minimal pain in the death experience. It is interesting that in our culture today we have successfully develop programs which prepare families for the birth of a child, why can we not take that same dynamic and apply to the end-of-life experience.

I believe that the NCCC will aggressively move forward on their agenda to address these and other significant issues in this arena, and it is the reason I am involved with this organization.

Ed Holbrook, is a member of the NCCC Operations Board.

News Notes

MAINE VOTERS REJECT ASSISTED SUICIDE (From the Physicians for Compassionate Care Newsletter)

330,671 people said "No" to assisted suicide in the state of Maine, defeating a 1.6 million dollar campaign to legalize doctor assisted suicide. The Citizens Against the Dangers of Assisted Suicide campaign was out spent by $642,526, money that was funneled into Maine from out of state by euthanasia activists.

The American Medical Association (AMA) applauded the defeat of the Maine assisted suicide referendum. Dr. Randolph D. Smoak, AMA president said, "The AMA is pleased that Maine voters have endorsed physicians' fundamental obligation 'to do no harm' by defeating a flawed ballot initiative that would have turned healers away from their primary purpose," he said.

Since the state of Oregon legalized assisted suicide, 14 other states have passed or stiffened laws that ban assisted suicide, while twenty four others retain current bans against the practice. Four states have now voted down assisted suicide, leaving Oregon farther out on a limb. "We are so grateful to the citizens campaign for this huge victory in Maine," said Dr. Hamilton, president of Physicians for Compassionate Care. "Their efforts, and the efforts of the Maine Medical Association and Maine Hospital Association, which clearly and forthrightly stood against assisted suicide, won another victory for ethical medical practice. Maine has joined California, Washington and Michigan in defending the principle that all human life is equally valuable, including the lives of the seriously ill," Hamilton said.

According to the Maine, Bangor Daily News, one of the TV advertisements credited with changing some of the voters minds on the issue of assisted suicide featured Dr. Thomas Reardon of Oregon, past president of the AMA. The advertisement showed a patient being wheeled into a room of gowned and masked ER doctors with Dr. Reardon saying: "After taking this medication some patients in Oregon had complications so disturbing that family members called 911."

The case Dr. Reardon was referring to was that of a man, who, after completing the paperwork for assisted suicide and taking the overdose was revived at a Portland Oregon hospital after his family called 911 for help when things went bad with the suicide attempt. The assisted suicide movement in Maine attempted to cast doubts on the existence of this case and attempted get the ad pulled off the air. The ad was not pulled. However, Oregon's Gov. John Kitzhaber, according to Michael O'D. Moore of the Bangor Daily News, "took the unusual step of recording an ad to denounce the Maine advertising campaign." According to transcripts of the ad, the Governor stated, "There are no complications with assisted suicide in Oregon, not one."

It comes as no surprise that the Governor of Oregon joined with assisted suicide advocates in Maine, since he did so in Oregon. What is surprising is that Dr. John Kitzhaber would say there were "no complications." Of course, there have been complications. There are complications with any procedure. The 911 call was just one example. The 911 case was reported and discussed during a December 1999 lecture at Portland Community College delivered by a Portland, Oregon attorney who was familiar with the details of the failed assisted suicide. Her description was documented at the time of her lecture. According to Cynthia Barrett, the elder law attorney who discussed the case, the family of the Oregon man called 911 for help after he took the prescribed assisted suicide overdose due to symptoms the family couldn't handle.

According to the Maine news, Maine Medical Association's executive vice president, Gordon Smith, MD, said the Citizens campaign was vindicated and that the data would reflect badly on Oregon's Governor, John Kitzhaber, who was once an emergency room physician.

DUTCH LEGALIZE EUTHANSIA/ASSISTED SUICIDE by Jos Welie

On April 10, the Upper House of the Dutch Parliament approved a bill legalizing euthanasia and physician assisted suicide.  The Bill had already passed the Lower House in November of last year.  Hence, the bill will now become law and is expected to take effect later this year.  In the next issue of the NCCC Newsletter, we will analyze the new law in greater detail.  But here are the highlights:

  • The bill in essence legalizes a practice that has been legally tolerated fro many years.  The policy not to prosecute physicians if they practice euthanasia in accordance with certain guidelines now has been turned into a codified law.  The net result of the legalization is that physicians who commit euthanasia according to these guidelines no longer can be prosecuted, whereas in the past, there was always some involvement by the legal authorities.

  • Euthanasia and assisted suicide are legalized only if they are committed by a physician.  No other health care provider has been granted this immunity, even though in the parliamentary discussions leading up to this bill it was repeatedly pointed out that euthanasia is no normal medical practice.  No argument was ever given why only physicians.

  • Euthanasia and assisted suicide is legal only if the patient makes an explicit request to that avail, either orally or in writing; suffering has to be unbearable and the condition without prospect; the physician has to consult another physician and keep notes - all conditions developed in Dutch jurisprudence over the past three decades.

  • Upon committing euthanasia, the physician has to inform the coroner, who will pass on the case to one of five regional committees consisting at a minimum of three people (an attorney, a physician and an ethicist/philosopher).  The committee will assess whether the physician acted in accordance with the guidelines.  If so, the case is closed.  If not, the case is passed on to the legal authorities.  This process raises two questions: (1) Will a physician who already knows he did not meet all the criteria, even report his deed?  Since more than half of all physicians at present do not report, despite the extremely liberal stance of the prosecutors, it's unclear whether the law will bring about any change.  (2) How will these five committees assess the 5,000 cases of euthanasia, assisted suicide and termination of life annually?  That boils down to 1,000 cases per committee.  If we assume that there are about 200 working days in a year, the committee has to assess 5 cases each day, i.e., a mere 90 minutes for each case!

More factual informaiton, including the English test of the bill, can be obtained at the following web address:  www.minjust.nl:8080/c_actual/persber/pb0715.htm

FAITH PERSPECTIVES

Dear Readers,

Today it is well understood in healthcare that healing is not something that takes place only in the body. Illness has a profound impact on the emotional, inter-personal, mental, and spiritual aspects of our lives. Naturally, these same parts of ourselves are intimately connected to our health and healing. We recognize the important role of spirituality for individuals and families who face the challenges of life-threatening illness. Consequently this is our second column in a series, "Faith Perspectives," offering insights from various religious and spiritual traditions. We hope that you will find some of these meaningful in your work and in your personal lives. Please respond to us with your comments and with material that you have found meaningful as people struggle with the meaning of illness in their lives.

What will you say?

In 50 years of ministry I have had a lot of funerals, shared the grief of many shared the grief of many and been with some when they died.  Some have died easily and others with great difficulty.  My wife's parents lived with us for 12 years and Grampy breathed his last with me at his side, cancer finally subduing his body.  Nana, his wife, succeeded him, but not until after a couple of emergency runs to the hospital.  Her rely, "I don't want to go through that again."  While in the hospital later, the very afternoon she was to come home with us, she passed peacefully and quickly away, with a loving family at her bedside.

Death is a non-escapable reality and earthly finality.  No amount of denial or chosen amnesia will prevent it.  Life is a gift from God and should and can be extended by common sense, healthy living and medicine.

There will come a time however, when through sickness, accident or age, life itself is threatened.  When they are younger, people usually fight to live.  When older, they may wish to pass on.  When my own father got incurable sick, my prayer was, "Lord, heal him or take him home."  In four days or so he went to be with the Lord.  With my wife's folks we all understood there would be no heroic measures taken to revive or resuscitate.  Nor would we take positive action to end the lives of loved ones.  We want them as comfortable as possible with pain-killing medication.  We would pray, "Lord, You who gave life can take life back.  You are in charge of us all.  End this suffering and take them on."  If we begin assisted suicide, where does the line get drawn?  Who decides how sick and how old?

One final word.  Death is a physical event.  But not just a physical event.  It is also a spiritual event.  At that point we shall all stand before God and Christ at the Final Judgment.  Christ himself experienced a death unparalleled in human history since He bore the sins of us all.  All of us are invited to repent and commit ourselves to Jesus as Savior and lord.  (Acts 17:30,31;  Romans 10:9,10).  Forgiveness and adoption into God's family follow.  We can then say, "Death, where is your sting?  O Grave where is your victory?"  (I Corinthians 15:55).  A resurrected and eternal body is given to us by Christ and everlasting life with Him.

This opportunity and its conditions are the ideas of a gracious God.  He will not kidnap or coerce anyone against their will.  Death will then not have the last say.  Now, what will you say?

Pastor Elmer H. Murdoch is the Director of Step Up to Life Ministries and is founder and former Senior Pastor of Trinity Church, Interdenominational.

 

Coalition Activities. . .

Upcoming Presentations

NCCC will not be sponsoring its own conference this year but will instead be giving presentations on end-of-life issues at two conferences in the Fall of 2001. Look for us at:

  • Health Ministry Conference, Oct 4-5, Omaha
  • Nebraska Associations of Hospitals and Health Systems, Oct 24-26, Lincoln

The Coalition is making plans to sponsor its own conference in Spring 2002. The tentative theme of this conference will be "Barriers of Good End-of-Life Care" and will focus on pain management, legal barriers and spiritual barriers.

More details on these upcoming conferences will be included on this website and in subsequent issues of this newsletter.

Drama Review: WIT- Omaha's Blue Barn Theatre

Reviewed by Sr. Barbara Brumleve

What do cancer research and 17th-century poetry have in common? Lots, when Professor Vivian Bearing takes to the stage in Margaret Edson’s Pulitizer-prize winning drama Wit, which recently played at Omaha’s Blue Barn Theatre. A scholar in John Donne’s sonnets, Professor Bearing is receiving treatment for late-stage ovarian cancer when the play begins. She delivers her opening line, "Hello, how are you feeling today?" with its expected answer, "Fine," using a hint of sarcasm (or is it 17th-century irony), explaining to the audience that one time she was asked the question as she was throwing up.

Professor Bearing invokes the wit, irony, and paradox of her scholarly field to deal with her situation. Sometimes it works; sometimes it doesn’t. She can explain how in Donne’s sonnet, "Death, be not proud," death is a mere comma between this life and eternal life. But at another time, she says, "I’m scared. I don’t feel sure of myself anymore."

Professor Bearing is much like her attending physician and the resident, who at one time took the Professor’s poetry course. All relish intellectual puzzles, be they poetry or cancer research. Vivian, however, breaks through her intellectual approach as the cancer treatment imperils her life.

When I attended the play, the audience was largely from healthcare. Following the play was a discussion led by three Alegent Health professionals: hospice medical director, ethicist, and oncology research nurse. While some of the discussion focused on issues of treatment (DNR, research, informed consent), most of the comments addressed the human spirit of Professor Bearing, at once strong and vulnerable.

A TV version of Wit recently aired on HBO, but at present the drama is not available on video.

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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Compassionate Care Journal

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

Winter 2000-01, Vol. 4.4; Other newsletters include: July-August 2001, Vol. 5.2; Spring 2001, Vol. 5.1; November 2000, Vol. 4.3; July 2000, Vol. 4.2; April 2000, Vol. 4.1; January 2000, 3.4; October 1999, Vol. 3.3; June 1999, Vol. 3.2; March 1999, Vol. 3.1)

New Expectations for Doctors and Nurses to Measure and Treat Patients’ Pain 

Reprinted from Last Acts, an on-line community dedicated to improving end of life care

Washington, D.C. - In response to an outcry from medical professionals about the need to better control patients' pain in US hospitals, the group that accredits most of the nation's hospitals and thousands of other health care organizations will begin monitoring how well these facilities assess and treat pain beginning this year. The Joint Commission on Accreditation of Health Care Organizations' (JCAHO) new pain management standards are welcomed by thousands of clinicians, pain experts, patients and their families who have seen pain gone untreated or undertreated for decades.

Under the new JCAHO standards, patients will be asked about pain and the intensity of the pain—sometimes by rating it on a simple "zero to 10" scale. Doctors and nurses will be expected to treat the patients' pain and continue to assess treatment during and after hospitalization.

The move by JCAHO has been hailed as an extremely important—and long overdue—step that will dramatically affect patient care throughout the United States.

"These changes have the power to improve the quality of life for millions and millions of Americans. This is a great victory for cancer patients in particular whose pain is often undertreated," said June L. Dahl, PhD, Professor of Pharmacology at the University of Wisconsin Medical School and President of the American Alliance of Cancer Pain Initiatives (AACPI). "Many care givers, particularly those involved in cancer treatment, have been challenging health care leaders for years about the need to assess and treat patients' pain better."

Studies show that an estimated 70 percent of people with cancer experience significant pain, yet fewer than half receive adequate pain treatment. Fifty million Americans suffer from chronic pain, and four out ten people with moderate to severe chronic pain do not receive adequate relief.

"The standards acknowledge that pain is a condition that needs explicit attention," said Carole Patterson, MN, RN, Director of the Standards Interpretation Unit of JCAHO. "Research shows that surgical pain and pain at the end of life, such as cancer pain, has not been managed well. Therefore, these standards should have a significant impact on pain management for patients."

The AACPI and the nearly 50 State Cancer Pain Initiatives headed by nurses, physicians, pharmacists, social workers and researchers have long advocated for better pain control in the nation's health care system, and see the new standards as a milestone in efforts to overcome barriers to effective pain relief. The new pain management standards are included in the 2000-2001 standards manuals, and JCAHO surveyors will be assessing compliance starting in 2001.

Today's move will not affect all hospitals, nursing homes and other facilities—only those accredited by the JCAHO. The JCAHO accredits 80 percent of the nation's hospitals that control 98 percent of the hospital beds.

"Undertreating pain has been and still is bad medicine, and is often based on unfounded fear, ignorance or miscommunication by health care professionals and patients," Dahl said. "Hopefully, the new standards will begin to change this."

The American Alliance of Cancer Pain Initiatives is dedicated to promoting cancer pain relief nationwide by supporting the efforts of State Cancer Pain Initiatives. Cancer Pain Initiatives are voluntary, grassroots organizations composed of nurses, physicians, pharmacists, social workers, psychologists, and representatives of clergy, higher education, and government. Initiatives and their participants provide education and advocacy to healthcare providers, cancer patients and their families.

The Joint Commission is an independent, not-for-profit organization, and is the nation's predominant standards setting and accrediting body in health care. Since 1951, the Joint Commission has developed standards to continuously improve the safety and quality of care provided to the public and evaluates health care organizations against these benchmarks.

CASE STUDY: TERMINAL SLEEPLESSNESS

This case concerns a 58-year-old male who now has been awake for 3 weeks straight. Originally, he was admitted to hospice services for terminal stomach cancer. He had experienced several months of gastrointestinal upset and pain. Until the diagnosis of stomach cancer was finally made, it was treated for four months as an ulcer. He was given chemotherapy, but the tumor did not respond. The nausea, vomiting, and weakness increased with the therapy. The patient then decided to stop all chemotherapy and to do the best he could with the time he had remaining, making him very appropriate for hospice.

When he was admitted to hospice, he complained of a constant, gnawing, localized ache in his abdomen that he rated as 5 on a 1-10 scale. He was taking Dilaudid and liquid morphine for the pain. He had tried many types of medications for his pain, anxiety and other symptoms (Seconal 100mg at hs, Relafen 500mg qd, Prevacid 30mg. qd, Dicyclomine 10mg qid, Lipram prn, Roxicet 5/325, Zoloft 50mg qd, Roxicodone prn, Flatulex prn, Darvocet N-100 prn, and Benzonatate prn for cough, and Marinol), but they were ineffective and/or gave him side-effects he could not tolerate such as hallucinations of colors, or increased agitation and restless.

The hospice team tried very hard to allow him the independence and autonomy he desired. He was home alone at first. His wife worked. But his pain began increasing and he became unable to put any food or medications into his stomach. We educated his wife and family as to the short prognosis expected and suggested she take her family leave time to stay home. His weakness was increasing and he was extremely restless. The most difficult symptom to manage was the restlessness and his inability to sleep. We had already discontinued all of his oral meds and were giving his pain medication (Dilaudid) via subcutaneous infusion. We had tried Nembutal suppositories and phenobarb rectally with some results but Nembutal suppositories became no longer available and the rectal tablets did not have the same effect.

We encouraged the children to come home to visit, and him to talk to them, to give them a chance to reconcile and share. We also asked the family and patient if they would like a pastoral care visit. They had no church affiliation, and he felt somewhat guilty about that. They accepted visits by the chaplain because he reported that he had seen a vision of Jesus. In the vision he could not see Jesus’ face but Jesus told him that "everything will be ok". He verbalized not having any fear of death, but having the desire to be with his wife as long as possible.

As mentioned, the patient has been awake for 3 weeks straight (except for 12 –15 minute intervals) and has taken only sips of clear liquids. We have tried Haldol, Ativan, Pheragan suppositories, but nothing will put him to sleep. We discussed total sedation. Our expectation was that if he did go to sleep his body might relax enough to "let go". Although our discussions did seem to have opened his eyes to this final option to get some sleep, he has refused. Not only is the patient exhausted, but so is the family.

LaDonna VanEngen, RN

St. Elizabeth Hospice, Lincoln, NE

Commentary 1

 

This patient presents some challenges beyond the scope of our usual hospice experience. A review of medicine texts regarding the normal rhythms of sleep and some common sleep disorders offers some additional ideas for treatment.

First of all, I would like to see this patient avail himself of the chaplain services, and/or counseling services to voice any fears he has about death, and to be allowed the opportunity to grieve his losses and decline. Maybe peace will be found there.

Perhaps the addition of amitryptiline would provide sedation and elevate the pain threshold (trazadone might have the same effect). I would suggest a rapid taper up to perhaps 100mg nightly, and with his other pain medicines he might have much more relief. In addition, if the pain were found to be due to impaired nerve tracts from metastases, he might benefit from palliative radiation, or epidural catheter placement.

Respite care should certainly be offered to this family, who are no doubt dealing with sleep deprivation issues of their own. They should be encouraged to take some time off for rest, and reminded that they will be better care providers if they are able to do that.

Mark D. Goodman, M.D.

Creighton Dept. of Family Practice and Center for Health Policy and Ethics

Commentary 2

 

Total sedation was offered to this patient as a final, dramatic yet effective way of over-coming his lasting sleeplessness. This option is offered more commonly when it is impossible to adequately manage the patient’s excessive pain or other unbearable symptoms. Such situations are rare. It is, however, important to emphasize that total sedation is an ethically sound option in such unusual circumstances. Certain conditions must be met: (1) all other, less dramatic means of relieving the patient’s suffering have failed; (2) total sedation is the only effective means of relief; (3) the patient has been properly informed and counseled about the nature and consequences of this treatment; and (4) the patient freely chooses this option.

Total sedation is not a form of euthanasia, because the purpose is not to end the patient’s life. It is an attempt to grant the patient rest from his sufferings while respecting his life and dignity. Even in sleep, a human being is of immeasurable value, to be respected and cared for diligently. Granted, most dying patients prefer to be awake and able to actively communicate with their loved ones at least part of the time. But in and of itself, a state of sleep is not an immoral alternative. Unlike death, sleep is a proper state of being for human beings, a state in which we anyway spend close to half of our life. It is a proper way for tired children to be re-energized; for stressed adults to find piece of mind; for the dying to be relieved of suffering. 

Jos Welie, MMEDS, JD,PhD

Creighton Center for Health, Policy & Ethics

Why I Became Involved in NCCC by LaVon Crosby

I just feel that if I continue to speak out about life as the precious gift we receive from the Holy Spirit, I should be willing to help those people who are working at spreading the knowledge and awareness of that message. I particularly find Deuteronomy (30:16) and Sirach (3:2-6,12-14)to be wonderful messages about how we should love and care for the elderly.

LaVon Crosby, is a member of the NCCC Operations Board and former Nebraska state senator.

Lower House of Dutch Parliament Approves Historic Right-to-Die Law

By Anthony Deutsch

The Associated Press

THE HAGUE, Netherlands – The Dutch parliament approved a bill legalizing euthanasia recently, positioning the Netherlands to become the first nation to openly let doctors help patients end their lives.

Advocates of patients’ right to die praised the vote, but Christian groups and others condemned the move. The Vatican said the law "violates human dignity."

After the 104-40 vote in Parliament’s lower house, the bill was expected to win approval by the upper house early next year.

With the law, the Netherlands would formalize the tolerance it has long held toward euthanasia. Thousands of cases are reported every year here and many more to unreported. In 1993, legislators passed a set of guidelines that doctors could follow to carry out euthanasia and not be prosecuted.

Still, euthanasia was a crime punishable by up to 12 years in prison. The new legislation largely adopts the informal guidelines, which say the patient must be feeling unrelenting suffering and know all the medical options.

Patients as young as 16 can seek euthanasia in consultation with their parents. Children ages 12-15 must have parental consent.

"Doctors should not be treated as criminals," said health Minister Els Borst, who drafted the bill. "This will create security for doctors and patients alike."

 

 

 

Some Dutch legislators denounced the bill.

"This is a black day in the history of our parliament," said lawmaker Bas van der Blies of the State Reform Party SGP. "We believe as Christians that our lives are not in our hands, that we cannot ourselves decide."

The Vatican said the law was "a sad record for Holland."

"Again, we are faced with a law of the state which opposes the natural law of human conscience," Vatican spokesman Joaquin Navaro-Valls said.

Under the new Dutch law:

  • A patient must be enduring unremitting, unbearable suffering.

  • Patients must be aware of all medical options and have sought a second professional opinion.

  • The request must be made voluntarily, persistently and independently.

But the bill does not stipulate that the patient’s suffering must be physical, leaving room for unbearable mental suffering to be sufficient cause. It also does not require that the disease be terminal.

Faith Perspectives

Dear Readers,

Today it is well understood in healthcare that healing is not something that takes place only in the body. Illness has a profound impact on the emotional, inter-personal, mental, and spiritual aspects of our lives. Naturally, these same parts of ourselves are intimately connected to our health and healing. We recognize the important role of spirituality for individuals and families who face the challenges of life-threatening illness. Consequently we plan a new column, "Faith Perspectives," offering insights from various religious and spiritual traditions. We hope that you will find some of these meaningful in your work and in your personal lives. Please respond to us with your comments and with material that you have found meaningful as people struggle with the meaning of illness in their lives.

Passage to Wholeness

Judaism offers potent remedies to strengthen the body and spirit

By Rabbi Eric Weiss

Being sick is like being a stranger to one’s own life. We feel it most acutely in our intimate circles. With illness come profound changes in our relationships. Loved ones must consider our needs in a different way. Friendships must adjust to survive. It is a time in which we need to draw upon our spiritual and religious will, regardless of how much or how little we used it in the past.

When Margalit (her name has been changed) first called me, she had been recently diagnosed with cancer. From her many years of being involved in the Jewish community, Margalit knew where to seek the kind of spiritual healing she needed more than anything.

Margalit came to me for help. What concrete steps could she take to find meaning through this crisis? I asked Margalit what gave her a sense of awe.

"When I’m doing things with my family," she replied. "It’s just amazing to me that I have this wonderful husband who loves and supports me, and a daughter I once dreamed of having who’s now a wonderful young woman. It’s a blessing."

As she spoke, she realized that being with her family was helping her to overcome her fear about the future. "With them I somehow don’t feel so afraid of all the medical treatments," she said, an uplift in her voice.

We both smiled. "Let me tell you two Jewish stories," I said, "which offer some spiritual wisdom about the power of relationships to heal us. Centuries ago, in Jerusalem, there lived a man known as Honi the circle-maker, who was renowned for the way he prayed for rain. As the people gathered around him, he would slowly draw a circle and step inside it. There, he would pray for rain. And, miraculously, rain fell." "My family and friends have circled around me, too," said Margalit. "I just never thought of it as something I could connect to Jewish tradition." Margalit then seized on an idea: she could form circles of caring with the support of her family and friends. "I can use Honi as a guide to pay attention to what I need and how people can help me."

"The second story," I went on, "is from Torah. In Exodus, we read that Jethro brings his grandsons, 

Gershom and Eliezer, back to their father Moses after God has saved the Israelites. Gershom is commonly translated as ‘I was a stranger there’ and Eliezer as ‘My God will help.’" "The biblical names," Margalit said excitedly, "are just like my own family, making the journey from being a Gershom to an Eliezer! I understand how harsh it has been for them when I become ill. I’m not my old self, and I can’t be there for them in the ways they’ve grown accustomed to, so they feel like they’re in a foreign place, too." Linking Jethro’s family and her own, she announced: I’m taking my family with me on my healing journey."

The chemotherapy Margalit underwent was harsh. She wondered where God was while she was in her bed watching the clear fluid enter into her veins. Margalit assumed that God did not enter hospitals, and this intensified her sense of estrangement. I suggested she use her imagination and sense of wonder to bring God into the room. "How would you feel if there was a mezuzah on the door of the hospital room?" I asked her. "Oh, it would be great," she smiled. I explained that in ancient times a mezuzah was actually a door frame. The words of the Shema—"Hear, O Israel, Adonai is our God. Adonai is One"—contained in the mezuzah today were once written on the door frame itself.

"What if the room itself became a mezuzah?" I asked. "Then the hospital room would be a holy place where God listened," Margalit replied.

Margalit invited God into the hospital room. Though the chemotherapy was no less severe on her body, her sense of God’s presence reduced her anxiety. When our conversation ended, she wanted to recognize her new perception with a blessing. And so began a tradition of reciting a spontaneous prayer that suited the moment, and it always concluded with the priestly benediction: "May God bless you and protect you always. May God’s face shine upon you and may this light and warmth be gracious to you. May God’s face be ever lifted up toward you, and may this Divine regard for you, this holy attention, bring you the most precious of all sacred gifts: peace, wholeness, shalom."

This is an excerpt from the article "Passage to Wholeness." Rabbi Eric Weiss is part of the spiritual care team of Ruach Ami: Bay Area Jewish Healing Center in San Francisco, CA.. Ruach Ami is a Hebrew term which means "spirit of my people."

Coalition Activities...

Board Sets Goals in Strategic Planning Sessions

During strategic planning sessions held this last September and November, members of the Operations Board were asked to identify successful initiatives of the Coalition to date and to set goals for the coming year and beyond.

Successful initiatives identified by the current Operations Board included:  the completion and consensus of opinion on the NCCC Vision Statement, growth and diversity of the Advisory board, completion of the bylaws, formation of the acting Operations Board, receiving tax-exempt status, launching the NCCC website, near completion of the summary of end-of-life-related public policy, publishing and distribution of the quarterly newsletter, 2 well-attended conferences, establishment of working relationships with many organizations including the Hospice Associations and the Nebraska Medical Association, public hearings and forums.

The members of the Operation Board were then asked to formulate and prioritize goals for the coming year based on the discussion of initiatives and needs, the environment, its threats and opportunities for the coming year.  These five goals were formulated and prioritized in the following order:

  1. Clarify areas, initiatives needing work to improve end-of-life care in Nebraska;
  2. Become known as a prominent organization (to both media and individuals) for raising levels of knowledge and awareness of issues, re: end-of-life care;
  3. Make possible changes in the organizational structure as a means to accomplish chosen areas of focus in #1.  Make sure commitment and availability of Board members is adequate to their tasks;
  4. Expand size and diversity of membership by giving individuals and organizations compelling reasons to join, i.e., their participation must be valued and valuable;
  5. Be prepared to contest efforts to legalize euthanasia/physician-assisted suicide in Nebraska.

CD Review: EllenThy Will Be Done

by Ellen Soukup

CD Reviewed by LaDonna Van Engen

Music has a profound effect on the body and the mind. It can be used as a therapy to establish movement or a shift in energy away from the experience of pain. That pain may be physical, emotional or spiritual in nature. That person may become more balanced by the decrease or alleviation of the experience of pain as their attention is drawn to the music.

The new compact disc, "Ellen…Thy Will Be Done", by Nebraska native, Ellen Soukup, has that healing effect. This CD is a collection of contemporary Christian and gospel songs. Restful, soothing and relaxing are words I would use to describe the effect of several of the songs. Reassuring, encouraging and comforting would be used to describe others. This CD could lower blood pressure, relax muscles and give peace to the mind and soul of many people. Healing music such as this may allow persons to gain an increased understanding of his or her relationships to others, to self and to their God. The music can assist persons in accessing their inner sense of well-meaning or the meaning of their life.

Ellen has made this CD as a labor of love with encouragement from her family and friends and is using her gift as a ministry. A portion of the proceeds from the CD are being donated to her church. 

"Ellen… Thy Will Be Done," is available for order via email at: ellen-music@bigred.net or by calling 402/467-3123. It is also available at several religious goods stores in Lincoln and Omaha.

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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