PlainViews

Rev. Karen B. Taliesin on knitting with a purpose

Knit For Life™: A Healing Ministry

I was heading back to my office at the end of the day at Children’s Hospital when I was paged by a nurse on the hematology/oncology unit. I called the unit, and the nurse, laughing, asked, “Are you the knitting chaplain?”I laughed and said that I was. “Well,”the nurse began, “I have a mom here who is having a…knitting crisis…”We were both laughing as I said, “I’ll be right there!”Arriving at the patient’s room, I helped the mom with the sweater she was knitting and then reminded her that the “knitting experts”would be back in a few days. She said, “I know, and I can’t wait!”

The “knitting experts”are the women with Knit for Life™, a network of volunteers who use the healing experience of knitting to enhance the lives of cancer patients and their caregivers during treatment and recovery. The program was created by Tanya Parieaux, a breast cancer survivor, who brings Knit for Life to hospitals in the Seattle area. At Children’s Hospital, the Knit for Life team sets up in the hematology/oncology inpatient unit once a week with bins of donated yarn and needles, which are freely given to patients and family members interested in knitting. As a chaplain at Children’s, I became acquainted with Knit for Life as I stopped by the group to chat with patients and family members. Eventually, Tanya told me that I couldn’t “hang out”with them anymore unless I learned to knit. Before I knew it, I was knitting!

So I sit with the Knit for Life group as they visit and teach knitting. Not only is knitting fabulous therapy for me personally (enabling me to knit the prayer shawls we give away in our chapel), but by participating with Knit for Life, I connect with family members and patients who are hesitant to connect with a chaplain. Talking while working with our hands can alleviate the intensity of a one-on-one conversation, allowing patients and family members to talk with me casually as we share and laugh with everyone in the group. We may talk about our knitting but, invariably, the conversation turns to lab results, a mother’s fears, or an older brother’s worries. Often, family members will ask me to stop by their room later so, as one dad said, “we can really talk.”

Knit for Life offers an activity to help families get through the long weeks and months spent in the hospital. Tanya and the volunteers create a safe, loving, and sacred space. This holy ground was palpable one Monday after a long-time patient had died on the unit that morning. The mother of another patient was very upset by the death. As this mother, an avid knitter who attended Knit for Life regularly, walked by the group, Tanya and the others gathered her into “the fold.”We continued to knit and listened as she spoke sadly of the sweet child who had died. One of the volunteers slipped a pair of knitting needles into the mother’s hands and Tanya laid some yarn on her lap. Still talking and crying, the mother picked up the needles and cast on several stitches. As she began to knit, she started to smile and talk of the funny things the patient who died had said and done with this mother’s own daughter. At times, her tears would return and we simply continued to knit as she knitted through her grief. It was one of the most loving and gracious examples of ministry I have ever witnessed.

Knitting gives a bit of respite to those making their way through the mine fields of a child’s illness or injury. Knit for Life provides creative support to our patients and their family members. As one mother said, “While the doctors are saving my daughter’s life, Knit for Life is saving mine!”

The Rev. Karen B. Taliesin, BCC, is a chaplain at Children’s Hospital and Regional Medical Center in Seattle, Washington, and is an ordained Unitarian Universalist minister. She recently helped teach the third grade Religion Education class to knit at East Shore Unitarian Church where she is a member along with her husband (who is graciously tolerant of the growing pile of yarn and unfinished knitting projects in their home!).

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She was pregnant and tears were running down her face. Her mother had gone into surgery for a brain aneurism and then had a stroke on the right side of her brain. Now her mother lay in bed, part of her skull missing, on a ventilator, not moving. In the staff’s opinion she was going to die.

What is my role as chaplain in this situation? That night I listened, I offered support, and I prayed. And there was one more role I played which chaplains and nurses tend to shy away from. That role was to empathize and help the doctor clarify the diagnosis and prognoses of the patient with the daughter.

When the doctor finished his guarded explanation that night, using medical terms interspersed with common words and a lot of “ums”and “ahs,”I asked a few questions:

Simple questions helped the doctor explain the effects of the stroke, clarify much that was wrong, give a more accurate prognosis, and show the daughter signs to look for, both good and bad. When the doctor finished, the daughter thanked me for my questions and the doctor seemed relieved.

Another day, I was with a family as the doctor explained the patient’s situation. I asked a simple question that the doctor answered easily. The nurse commented to me later that she was surprised I had asked such a simple question. She thought I would have known the answer. Sure, I knew the answer, I told her, but the family did not.

Every case that was brought to the Ethics Consult Team in the last nine months involved communication, not ethics. Studies have shown that many doctors are unskilled communicators, especially in end-of-life situations. I do not believe trying to train doctors to be better communicators is the answer. I believe, however, we can help them communicate better. Chaplains have the unique opportunity to be "outside" the situation and can use reason, caring and empathy to help all concerned. By asking a few simple questions to clarify diagnosis and prognosis we can help communication among patients, family, staff and doctors.

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As we sift through the material that is inundating our world on every front, we begin to realize the far reaching effects and impact that an influenza pandemic would have, not only on our communities but also on the provision of public health services and other essential services, not to mention the economy.

Stockwell Day, the minister of public safety, stated, “The Department of Public Safety and Public Health Agency of Canada are working together to address issues which relate to a possible pandemic and its societal impacts. At the federal level, much work has been undertaken in the areas of international issues, federal business continuity and human resources, public health and emergency management, communications, economic and social impact and with the private sector.”

Public Safety, through national organizations, is also engaged in discussions with non-governmental organizations on issues regarding community engagement. In order to ensure a fully coordinated response, we must work in partnership with associations and umbrella groups. This will afford an opportunity to share ideas and strategies for providing the best level of care.

An influenza pandemic is much more than just a problem for the healthcare system –it is a societal problem. A pandemic will be best managed by the coordinated participation and cooperation of governments, businesses, organizations, churches/ministries and individuals.

This unique emergency with catastrophic effects is something we have not yet experienced. At this point we can only speculate on the impact, but we know the devastation can be minimized if we prepare in advance and have a contingency plan in place.

The faith community has an opportunity to play an integral role building a bridge of love from the church to the healthcare authorities and beyond. The demand on the system will be so immense that it will be necessary to have alternative care mechanisms in place, which can then be mobilized quickly when the need arises.

To reduce fear and anxiety, education and a preparedness plan will greatly reduce panic and thus ineffectiveness. How each engage in the process is still the ‘million dollar question.’We are, however, encouraging churches, ministries, and NGO’s to be intentional in gathering information and resources that are available in one’s city/community and through the internet and begin a dialogue with other concerned individuals. Those might include pastors, doctors, parish nurses, chaplains, trained emergency workers, healthcare professionals, and other lay people.

Whether an influenza pandemic comes this year or in the next 5-7 years, could we not use this time to further equip our churches to reach out to our hurting communities –our neighbours –in concrete, understandable, compassionate and life-transforming ways? They are not hurting now. They will hurt should another epidemic come along. Virtually all preparations made will serve us well in dealing with other emergencies, small and large alike.

Are we ready to reach out and get to know our neighbour and show God’s love in our communities. Are we ready to serve and comfort those afflicted, dying, or seriously ill?

To ensure an effective and coordinated response to a pandemic let us work together. For further information, please go to www.churchresponse.org or www.bridgesoflove.net and download resource material that is available to help facilitate discussion towards your action strategy.

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Some people lead with their heads and some with their hearts. Good pastoral care engages the process of bringing heart and head together. When my husband Peter and I were first dating I was in seminary and he was working in a book store. I was stuck with a head full of theology and he was not sure he believed in God. One evening he invited me to dinner and before we ate he asked, “Do you mind if we pause for a moment to give thanks?”After the moments of silence I asked, “So who are you thanking?”His answer was, “I don’t know…I just feel so grateful I have to let it out.”I was disarmed and humbled, having never experienced such a feeling.

Before the 1940s, the care of the sick, the dying, and the marginalized tended to be didactic and moralistic. If someone was troubled, she needed a pep talk or an admonition. As soldiers came home from World War II they said that what they needed in the trenches was not a sermon, but a good ear. The pastoral care movement was emerging with two distinct schools of thought about the direction of care. First was the Boston school of the “Once Born”religious experience: “learn to be rational, face the facts, and conform to the real.”Trust God to carry you to health and fulfillment. Then the New York school of the “Twice born:”liberate yourself from rigid self-expectations and embrace chaos knowing that God is in the chaos, too. Irrational inner conflict must be integrated into who you are and how you love.[1] In the context of Christianity, the experience was “twice born”because it involved the Cross, what Paul refers to as “Christ crucified,”“the foolishness of God that is wiser than men, the weakness of God that is stronger than men”[I Cor.1:22-25]. It involves an encounter with suffering and evil and requires heart.

Figuratively, I have journeyed south on the Boston Post Road, a journey of descent from head to heart. Martha Nussbaum critiques much of Western philosophical thought on the basis that it has separated reason from emotion. She argues that, in fact, emotions inform intelligence and identity because they shape the value we place upon the persons and objects that we cherish. Our passions, including our erotic and aggressive passions, help us embrace the fullness of life.[2]

Sh'ma Yisrael Adonai Elohaynu Adonai Echad. “Hear O Israel: The Lord our God is one Lord; and you shall love the Lord your God with all your heart, and with all your soul and with all your might (or, as it is translated in Jesus’words, “and with all your mind”). If we cannot bring head and heart together, we cannot function with integrity as pastoral care givers or persons of faith because we cannot embrace suffering and pain.

[1] “Clinical Pastoral Education,”from Dictionary of Pastoral Care and Joan Hemenway, Inside the Circle, Chapter 1, JPC Publications

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EthicsWalk addresses spiritual care as an ethical enterprise. It explores why relationships between spiritual care providers and those they serve need protection, and examines what that protection entails. PlainViews invites our readers to share their responses to each EthicsWalk column, which will be published in the following issue.

If you’d like to respond to EthicsWalk, please send a comment of no more than 100 words. You can use the e-form below (click on "hearing from you," link) or submit your commentary to the editors in the body of an e-mail (or as a Microsoft Word attachment) sent to Info@PlainViews.org. Please put the phrase “EthicsWalk” in your subject line.

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I just donated blood at my local Red Cross chapter last week. In the intake I was asked to confirm at least twice that the identification information was correct. And they did ask about the SSN. So I wonder where the statement that "Blood banks cannot require SSN’s for donors or recipients: SSN’s have been used for participant identification. The Red Cross stopped the practice" is supported.

Rev. Dale Pracht
Director, Spiritual Care Services
Faith Regional Health Services
Nebraska

Red Cross blood bank receptionists are not always aware of new national protocols, especially non-medical ones. Red Cross banks are authorized to "invent an alternate number" if the donor does not want to use the SSN. Unfortunately, the donor may have to explain and persist with the request to omit the SSN.

This is an example of why people need to be aware of their rights in relation to divulging their SSN's and advocate for themselves when the SSN is requested.

At lunch recently, a chaplain mentioned that she’d just dropped a very thick envelop of highly personal medical information in the mail to an international research project on breast cancer. She was having second thoughts about her participation; not because of the extensive medical information, but because she “had to provide”her social security number (SSN) as a “participant I.D.”She’d read a New York Times article in which the Federal Trade Commission estimated that 10 million U.S. citizens a year have their identities stolen.[1] Medical records are a rich resource for pillaging SSN’s, the key component to identity theft.

The federal government issued SSN’s in 1936 to track citizens’benefits in Social Security programs. The Social Security Administration (SSA) assured Americans the numbers would have no further distribution or use. While the SSA largely kept that promise, other governmental agencies and private entities co-opted the SSN as the easiest form of identity coding. It is the most commonly used recordkeeping number in the United States.[2]

The Privacy Act of 1974[3] curtails some exploitation by government agencies if consumers exercise their rights.[4] It does not cover private entities although other laws addressing privacy often do.

People are unaware they need not comply with every SSN request. Indeed, it is socially and personally responsible not to comply with most! The breast cancer project used social security numbers for convenience. Requiring participant SSN’s was an unnecessary privacy intrusion with no medical research justification.

Awareness of individual and institutional rights and responsibilities regarding use and distribution of SSN’s is important to effective advocacy by chaplains for patients (and themselves).

Respect for personal privacy is a core ethical value. Recognizing and realizing opportunities to educate and advocate for privacy protection is socially responsible ministry.

[1] “Some ID Theft Is Not for Profit But to Get a Job,”The New York Times, September 4, 2006, p. A-12. Many stolen SSN’s are sold to undocumented immigrants to enable them to get employment. Employers don’t verify data and the SSA collects millions it never pays out to the undocumented workers who subsidize the system for U.S. citizens.
[2] See “My Social Security Number: How Secure Is It?”January 2006, Privacy Rights Clearinghouse, www.privacyrights.org
[3] 5 USC Sec.552a
[4] Federal, state and local entities requesting SSN’s must provide a “disclosure”statement on the form requesting the number. It must disclose how the SSN is used, by what authority it is sought, and state if providing the number is optional or mandatory (motor vehicle departments, tax authorities and welfare offices are among the few permitted to require SSN’s.).
[5] The Privacy Act of 1974 (5USC 552a) text at www.usdoj.gov/foia/privstat.htm
[6] If you are a patient in an institution that employs you, make certain your SSN is not “automatically”transported from your employment file to your medical record.
[7] CPE programs received federal funds in the form of student financial aid making them subject to FERPA in other areas of student life as well as SSN use.
[8] FERPA the “Buckley Amendment”of 1974 [20 USC 123g]
[9] If an institution argues the SSN is not part of the student record, Krebs v. Rutgers, 797F.Supp.1246 (D.N.J. 1992) rules to the contrary. SSN’s are properly required for financial aid and student employment but cannot be used for other purposes.

We post an ethical or situational concern that has arisen in a facility where one of our readers works. It has no identifiers included. It gives you only the facts of the case. Then, you can respond to that concern. This is an ongoing dialogue, with comments added as they come in. In the following issue, assuming it has been resolved, we give you the outcome from the facility where the incident took place. Please send any cases that you would like considered for inclusion to: info@plainviews.org

We hope that this new addition will help to inform not only those who are dealing with the issue, but will enable all of our readers to learn from the experiences and perhaps mistakes of others.

PLEASE NOTE: Due to unanticipated continuing responses to both the case and the resolution of the case, added responses can be viewed in the archives. Click HERE.

Nursing paged the chaplain to make a referral to see a 75-year-old woman recovering from back surgery performed seven days ago due to non-compliance with recovery care. The nurse explained that she had just spent 45 minutes with the patient who was insisting on receiving a sleep aid in addition to her pain medication. The patient had been seen by the pain specialist and a pain plan was in place, but she was still refusing to cooperate with nursing or participate in therapies, saying, "I just want to sleep it all through because it hurts so much." The nurse added at the end of the referral request that the patient's husband had died two weeks ago.

Please check the archives below for comments made about the last CaseConference.

We first meet a Tibetan refugee as he toils building a stone wall in Massachusetts. The camera follows him as he returns to his occupied homeland for the first time since his escape 12 years earlier and travels primitive roads to his village. The sight of his sister, who remained in Tibet and farmed the family plot following his escape, shocks him. She has aged greatly, while he appears strong and healthy in middle age.

In his village he confronts his past, including training as a Buddhist monk, and his past is enhanced by archival footage that focuses on the history of Tibet. He also confronts his future and the future of Tibet as he prepares to return to America. There are wrenching scenes as parents in his extended family make the decision to send two of their young daughters with him across the border to India, so that they can receive an education. Everyone realizes that it may be the last time the family is together.

Familial, spiritual, cultural and social issues familiar to Chaplains shine through in the poignant, unrehearsed moments captured in Home to Tibet.

Completed: 1996
Running Time: 55 Minutes
Directors/Producers: Alan Dater and Lisa Merton

If you are interested in purchasing this film, you can do so at www.hartleyfoundation.org. Just click on “Masterworks”on the homepage for more information. The cost of the film is $29.95/VHS.

Sarah Masters is the Managing Director of the Hartley Film Foundation, a non-profit foundation dedicated to cultivation, support, production and distribution of the best documentaries and audio meditations on world religions, spirituality, ethics and well-being.

In recent years, spiritual direction has grown and expanded. In order to reflect that growth, editor Norvene Vest has compiled thirteen ”cutting edge”(Introduction, p. ix) essays from the practice of seasoned spiritual directors. Vest provides three sections of essays: 1) the person who comes for direction, 2) special life issues that intersect with spiritual development, and 3) the social context.
Each essay reflects the variety of faith traditions for the director as well as the directee. In these essays, spiritual directors are addressing: abused persons, the poor, church drop-outs, and gays and lesbians. Several essays look at spiritual direction in new contexts, such as the congregational setting, the corporate arena, generational issues, and direction at the turn of the century. The final section addresses some specific circumstances: working with the addicted, direction with those who are dying, using art in spiritual direction, and spiritual direction and social justice.

The essays are useful from the standpoint of diversity. They point to the fact that the spiritual director needs to be sensitive to individual issues, life issues as well as social context. These essays reinforce the notion that spiritual direction involves trusting the relationship enough to share ones deepest fear, shame, guilt, and anger. Indeed, directees help uncover the Mystery called God.

I was drawn to Margaret Guenther’s essay on spiritual direction and the dying (Chapter 8). As a parish pastor and now hospice chaplain, the needs of the dying are, without question, very significant. Spiritual issues rank near the top as people are dying, even though they may resist the chaplain by saying, “I’m not ready yet.”

“Prayerful presence,”(p. 106) as Guenther writes, is a good way to describe spiritual direction with the dying. We need to recognize that spiritual direction with the dying has its own time frame (p.106), patience is needed (p. 108), the spiritual director needs to be guided by the dying person (p. 109), and spiritual directors must face and know themselves (p. 116).

Howard Rice’s essay on the generations (Chapter 5) focuses on the builder generation, the silent generation, the boomer generation, the survivor generation, and the millennial generation. It provides some insight into how the different generations search for God’s reality.

Holy listening or companionship on the sacred journey is also found with the marginalized, that is, with those who appear invisible and inaudible. Juan Reed says that they serve as “witness”to an unfolding story. Those most excluded are the voices that need to be heard in a spiritual direction relationship. (Chapter 7). Spiritual direction is about being with the Spirit in discovering the connection we may already have with the Holy One.

Use of visual imagery (Chapter 11), artwork, and other forms of aesthetics may serve as road maps to the depths of our being. Both the right brain (visual/images) and left brain (linear) are needed in spiritual direction.

I agree with Norvene Vest when she writes, “[T]the essays do not speak with a single voice, but with a diversity that emphasizes the unity of our lives in God’s Spirit.”(Introduction, p. x) As spiritual directors, we find that we ourselves are formed by many influences, not least of which is God’s ongoing call to us to unfold in holiness.

Vest, Norvene, ed. Still Listening: New Horizons in Spiritual Direction (Harrisburg, Pennsylvania: Morehouse Publishing, 2000), pp 214.

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