Dying, Death, and Bereavement in Social Work Practice

Decision Cases for Advanced Practice

Terry A. Wolfer, Vicki M. Runnion

• Publisher: Columbia University Press
• Year: 2008
• eBook ISBN: 9780231512626
• Topic: Social Sciences
• Subtopic: Gerontology
• Index: Social Sciences

Practitioners who work with clients at the end of their lives face difficult decisions concerning the client's self-determination, the kind of death he or she will have, and the prolongation of life. They must also remain sensitive to the beliefs and needs of family members and the legal, ethical, and spiritual ramifications of the client's death. Featuring twenty-three decision cases based on interviews with professional social workers, this unique volume allows students to wrestle with the often incomplete and conflicting information, ethical issues, and time constraints of actual cases. Instead of offering easy solutions, this book provides detailed accounts that provoke stimulating debates among students, enabling them to confront their own responses, beliefs, and uncertainties to hone their critical thinking and decision making skills for professional practice.

*Please note: Teaching Notes for this volume will be available from Electronic Hallway in Spring 2010.

To access the Teaching Notes, you must first become a member of the Electronic Hallway. The main Electronic Hallway web page is at https://hallway.org/index.php. To join, click Become a Hallway Member in the Get Involved category or point your browser directly to https://hallway.org/involved/join.php and provide the required information.

After your instructor status has been confirmed, you will receive an e-mail granting access to the Electronic Hallway. Once logged on to Electronic Hallway as a member, click Case Search in the Cases and Resources category on themain web page. Enter "death, dying, bereavement" (without the quotation marks) in the search box, select "all of the words" in the drop down menu, and click Submit. The search process will generate a list of Teaching Notes for cases from Dying, Death, and Bereavement in Social Work Practice: Decision Cases for Advanced Practice.

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The Request

Mary Hylton and Terry A. Wolfer

AS THE MEETING AT PINECREST Intermediate Care Facility for the Mentally Retarded ended, hospice social worker Kathy Scott had more questions than before the meeting began. To judge by the expressions on their faces, her hospice colleagues were equally perplexed.

As she wedged her notebook into her briefcase, Kathy thought about Evelyn’s request. She was torn about whether or not the hospice should support Evelyn’s demand for termination of all life-prolonging treatments for her fourteen-year-old son, Timmy Jenkins. It had seemed to Kathy since her first meeting with Evelyn that Evelyn wanted Timmy to die. More than one family had expressed to her a readiness for a child to die in order to end his suffering, but this felt different. As Evelyn saw it, obtaining a Do Not Resuscitate (DNR) order and termination of antibiotics were steps toward facilitating his death. It was also obvious to Kathy that the Pinecrest staff did not share Evelyn’s wishes for her son.

Although hospice staff members often supported requests for the termination of life-prolonging treatments, Timmy’s situation was unusual. Although Kathy and her team members had agreed to assess his case, they had not yet determined whether to admit him to the pediatric program. After today’s meeting, Kathy wondered if Evelyn would still want to have hospice involved if they did not support her request. She also understood that if they did admit Timmy, they would have to decide to what extent they were willing to advocate on Evelyn’s behalf, given that Timmy was completely unable to participate in the decision.

Kathy looked at her hospice colleagues as they headed toward the door and thought, We have some difficult decisions to make.

Pinecrest Intermediate Care Facility for the Mentally Retarded

Pinecrest was one of four intermediate care facilities for the mentally retarded operated and regulated by the state since the 1920s. The imposing old four-story Gothic-style building, clearly separated from the neighborhood by its location high up on a hill, was surrounded by pine trees and a six-foot stone wall and accessible only by a narrow, winding, recently blacktopped road. The 120 residents were, almost without exception, profoundly disabled (although not in need of skilled nursing care on a regular basis), and most lived virtually their entire lives there. In contrast with common staff retention problems experienced in other nursing facilities, a majority of the staff at Pinecrest had worked there for more than 10 years and took pride in their longevity in a job that others rejected as too depressing or difficult.

Hospice of Springville

Hospice of Springville was the only hospice in the city of Springville, and was well regarded and well supported by the community. Local corporations and foundations had established a sort of rotating responsibility for funding the pediatric program, since in the early 1990s insurance companies were just beginning to recognize the need for hospice care for children.

The pediatric program at Hospice of Springville had expanded its admission criteria for children to include “life-threatening” conditions in addition to those more clearly recognized as “terminal.” The forceful personality and strong convictions of one early board member, who also happened to be a pediatrician, persuaded the hospice board to adopt these unusually broad criteria, and community support made it possible. Although one local home health agency also provided home care for pediatric clients, Hospice of Springville’s pediatric team had established a reputation for being able to bring some stability and calm into even the most chaotic situations, resulting in improved care for children by their families and far less stress for busy physicians. The “peds team” members often laughed about how they seemed to get “only the really messy cases,” but generally they enjoyed the challenges and the opportunity to make a significant difference for families and children as they dealt with difficult life circumstances.

The Referral

That’s odd, Kathy thought as she hung up the phone.

Contrary to the agency’s regular intake procedure, Dana Bruer, one of the pediatric team nurses, had called to request that the team meet to discuss the referral of Timmy Jenkins, an adolescent boy with severe hydrocephalus. Dana had stated that she felt it was important that the team talk before seeing Timmy or his mother, Evelyn, who was requesting hospice’s assistance in obtaining a DNR order. Although they were common among hospice clients, something in Dana’s voice indicated to Kathy that this situation was unusual.

At Evelyn’s request, Timmy had been referred to Hospice of Springville by the staff of Children’s Hospital following a single brief admission due to a seizure. Timmy had been born with severe hydrocephalus. Due to an accumulation of excess fluid in his skull, his head was approximately twenty-nine inches in diameter from ear to ear, and almost that large from front to back. His facial features appeared just slightly stretched. Although his eyes remained open, Timmy did not interact with others nor respond to visual or auditory stimuli. He had limited movement and had to be repositioned every two or three hours to prevent pressure sores. Due to the size of his head, it took three people to turn Timmy: two to turn his head while a third simultaneously turned his body. It was unknown whether he could see or hear.

Dana reported that she had gone with Timmy’s mother to visit him at Pinecrest Intermediate Care Facility, and that Evelyn was “watching me like a hawk” to ascertain her reactions to Timmy. Although Dana had worked as a pediatric nurse for many years and then in hospice for several years, she admitted that she was shocked by Timmy’s appearance and had to consciously suppress her reactions. She didn’t want others on the team to have the same experience. Dana suggested that team members might need time to deal with their own responses before talking with Evelyn.

Meeting Timmy

The next day, after receiving the referral, Kathy stood next to Hope Kirkland, the hospice chaplain, and stared at the young man in the bed. Although she had seen a great deal of variety in the human condition during her ten years working in the hospice field, she was decidedly unsettled by what she saw. Clad in a blue T-shirt and diaper, Timmy lay on his side with his eyes open. His sparse, soft brown hair had been cut close to his enormous head. Because he had lived the entirety of his fourteen years inside institutions, Timmy’s skin appeared nearly translucent. His thin, underdeveloped body resembled that of a ten-year-old rather than an adolescent. With his abnormally large head and small body, Kathy thought Timmy looked like a large embryo attached to a slightly flattened beach ball.

How can this be? she pondered. How can someone in this condition survive?

Kathy struggled to make meaning of Timmy’s situation. Although she had worked with people with severe mental retardation and with people who were comatose, nothing in her prior experience directly matched this. Timmy’s condition and life history raised questions for her regarding the meaning of being human. She felt unsure about how to relate to Timmy and unsure whether he could relate to others.

Kathy pulled a chair close to Timmy’s bed and sat down. For the first time since she had arrived, she began to look around. The small private room Timmy occupied at Pinecrest was decorated with stuffed animals and cards. She observed the room and its contents to be clean and noted that Timmy did not show any of the signs indicative of neglectful care. Although the Pinecrest nurses and aides seemed guarded with her and Hope, they appeared genuinely affectionate toward Timmy. On several occasions she heard them refer to Timmy as “my Timmy” or “our Timmy.” It seemed clear that he was well cared for.

Kathy Scott

At age thirty-three, Kathy Scott, a Caucasian woman from a middle-class background, had completed master’s degrees in both theology and social work. She was a thoughtful and reflective person who had earned the respect of her co-workers. Having worked for eight years at another hospice prior to Hospice of Springville, she was also an experienced social worker. Kathy had worked with the pediatric team at Hospice of Springville for almost two years.

Encountering Evelyn Brampton

The day after meeting Timmy, Kathy and Hope returned to Pinecrest, this time, to meet his mother, Evelyn Brampton. At Evelyn’s request, Dana had arranged for a meeting with all the hospice pediatric team members. Dana reported that Evelyn did not want to have to tell Timmy’s story repeatedly and requested the meeting so that she would only have to go through it once. Although the meeting was being held at Pinecrest, the purpose was to provide the hospice team members with essential background information, much of which was already known to Pinecrest staff. Evelyn had requested to meet with just the hospice team this first time, so none of the Pinecrest staff had been invited.

Kathy looked around the small room and smiled at her co-workers. Dana and Chris Tinsley, the expressive therapist who would be working with Timmy’s adolescent brother, were already seated in two of the five metal chairs surrounding the small conference table. A Caucasian woman with short dark hair, whom Kathy assumed to be Evelyn, sat stiffly across the table from them. Dana introduced Evelyn to the team and asked her to provide the group with some background information, including the details of Timmy’s birth and the incidents that had led up to the referral to hospice.

“Timmy’s birth was traumatic, and nearly cost me my life,” Evelyn began. “Due to the size of his head, the doctors had to perform a c-section. I nearly died in the process.”

Evelyn spoke matter-of-factly, but with an intensity that betrayed her surface calm. Kathy noted immediately that she was articulate and bright. However, something in her manner made Kathy feel uncomfortable.

“His doctors told us that he would not survive long,” Evelyn continued. “Because they believed he would die quickly, they decided against placing a shunt to drain the fluid accumulating on his brain. He was placed in a pediatric skilled nursing facility. I didn’t see him for weeks. I was still recovering physically from the birth, and I was maybe suffering from some depression.

“After several months it became apparent that Timmy was not going to die immediately, that he was living longer than was expected. His doctors decided that he would need to be moved to a less intensive and less costly facility. It was at this point that he was moved to Pinecrest.”

Dana interrupted Evelyn. “How old was Timmy when he was moved to Pinecrest?”

“About six months,” Evelyn responded.

“Has he remained here since that point?” Kathy inquired.

“Yes, excluding the hospitalizations,” Evelyn replied curtly. Kathy quickly calculated in her head that Timmy had resided at Pinecrest for thirteen years.

“Recently, Timmy’s condition has been deteriorating. In addition to the seizure that landed him in the hospital, he has been having increasingly frequent infections—urinary tract and pneumonia. I have repeatedly requested that a DNR be written, but the staff and doctors at Pinecrest refuse to listen to my request. That’s why I asked the nurse at Children’s Hospital to contact hospice.” Evelyn leaned across the table and spoke forcefully. “They continue to disregard my request for the DNR despite the fact that Timmy continues to get worse physically. As Timmy’s parent, don’t I have the right to decide what’s going to happen to him now?”

Evelyn’s voice sounded angry. “I have visited Timmy several times every week for the last fourteen years. I am tired, and I am ready for this to be over. I am ready for Timmy to die. I want hospice to help with my request.”

During her tenure in the hospice field Kathy had heard numerous family members say that they were ready for a loved one to die, but something about how Evelyn had said it made her uneasy. In Kathy’s experience, family members tended to be tired, sad, or even resolute. Evelyn was angry. There was a coldness, a hardness, about her that Kathy had never encountered before. She sensed that Evelyn was not merely ready for Timmy to die but actually wanted him to die. It almost feels like she would want us to help euthanize him if she thought we would do that, Kathy thought.

“You said you believe Timmy is getting worse. Can you tell us a little bit more about the infections and anything else that leads you to believe that his condition is deteriorating?” Dana asked.

“He has had several seizures recently and has had to be hospitalized. He has also had numerous urinary tract infections, and he had pneumonia a couple of months ago. Timmy is getting worse. The doctors and Pinecrest staff just can’t seem to see that. They persist in believing that he is responsive to their interventions. I think they refuse to see Timmy’s limitations because they don’t want to accept the futility of their work.” Evelyn paused to look around the room and then continued tersely, “There is a quarterly care-planning meeting in a couple of weeks and I would like for you to be there. The Pinecrest staff will not listen to me. Timmy is getting worse. I want that DNR and I need your help to get it. I am ready for him to die.”

The team was momentarily silent. Kathy noticed that Evelyn had never fully articulated what it was about Timmy’s current condition that indicated extensive deterioration. According to information Dana had provided, Timmy’s infections had been relatively minor and easily treated with antibiotics. She wondered whether Evelyn might be exaggerating. Kathy also thought she remembered that, as a state facility, Pinecrest could not honor a DNR order, but wondered why that information had not been shared with Evelyn. I’ll have to check that out, she thought.

“Perhaps we can visit Timmy during the week, if that would help you—maybe you could take a day off from visiting, knowing that one of us would be here. The visits would also give us an opportunity to assess Timmy,” Dana offered.

Evelyn straightened her back and nodded agreement. After a hurried thank you, she abruptly exited the room, leaving the team members alone. Hope let out a sigh and looked toward Kathy. “Whoa, what just happened here?”

“I don’t know what to think,” Kathy admitted. This was not a typical hospice case, as Timmy’s condition did not appear to be clearly terminal—yet it was not difficult to believe that his condition was life-threatening and that he could well die sooner rather than later. The team members agreed that further assessment was needed in order to decide what, if any, role hospice would play in this case.

“I’ll look through Timmy’s charts and speak with his doctors regarding his recent health problems,” Dana said.

“Okay, and I’ll see Evelyn, to offer her some support and see if she wants to work on grief issues with me,” Kathy volunteered. All four team members agreed to visit Timmy and to attend the upcoming care-planning meeting.

Getting to Know Evelyn

Kathy followed Evelyn into a rather formal and unused-looking living room for her first visit alone with her, with an unfamiliar degree of trepidation about how it would go. As at Pinecrest, Evelyn started talking immediately. It seemed evident from her rather rehearsed tone that she had covered the same topics several times before.

Twice married, Evelyn was facing her second divorce. Her first marriage, to Timmy’s father, ended two years after Timmy’s birth. Shortly after the divorce, Timmy’s father moved out of state. He had since remarried and had only minimal contact with Evelyn and Timmy.

Evelyn directly connected her first divorce to Timmy’s birth and subsequent illnesses. However, she believed that the impending second divorce was only tangentially related to Timmy’s situation. When Kathy pushed her...

Table of contents

• Cover 
• Half title
• Series Page
• Title
• Copyright
• Contents 
• To Instructors
• To Readers
• Preface and Acknowledgments
• Introduction to the Cases
• Case Summaries
• 1. The Request
• 2. ResponseAbilities
• 3. Family Matters
• 4. Drug Interactions
• 5. Whose Will When?
• 6. Unusual Appeal
• 7. The Last Dose
• 8. No Place for Grief (A)
• 9. Right Before Their Eyes
• 10. Private Charity (A)
• 11. Suicidal Co-ed
• 12. What Can I Tell? (A)
• 13. Grief at Work
• 14. Dying on Time
• 15. Just Thinking About It
• 16. A Painful Predicament
• 17. ’Til Death Do Us Part?
• 18. I Want to Talk to Your Supervisor!
• 19. Drowning Sorrows (A)
• 20. Seizing Hope (A)
• 21. Gifts (A)
• 22. Patty’s Girls
• 23. I Don’t Want Them Mad at Me (A)
• List of Contributing Authors