Medical journals, particularly those of clinical oncology and gerontology. frequently publish literature analyzing the obstacles faced by a physician in recommending hospice care to a terminal patient. This perspective is highly relevant, as many such patients will enter hospice: care only when they feel their physician has given them "permission." Though this dynamic appears paternalistic. it is not hard to imagine that some of these patients. when faced with a terminal diagnosis, may be so overwhelmed by the complexity of their situations and the mysticism of death that they purposely, though perhaps subconsciously. choose to cede this decision to an individual they view as more experienced: namely, the physician. This scenario poses an ethical dilemma because people define themselves by the decisions they make throughout life and to inadvertently take away this crucial component of self-determination during the final phase of life only adds to the inhumanity of death that so many fear. I would like to identify and analyze the most common of the myriad considerations that patients face when considering hospice care. If patients can be assisted in identifying their personal obstacles. they may feel more empowered in making their own decisions throughout the process of dying and therefore continue in self-defining existence.

The first part of my study would involve a review of existing research on the psychology of accepting end-of-life care from the patient's perspective. I would use this information to compile a list of potential obstacles a patient might face in choosing to enter hospice care, such as fear of abandonment by their oncologist or lifelong primary care doctor, denial of prognosis, depression and/or fatigue, religious beliefs. etc. Pending IRB approval. I would then work with area hospices, including, but not limited to Arkansas Hospice, to identify patients that would be willing to allow a home visit. At those visits, I would conduct interviews with the patient regarding the evolution of their consideration and subsequent choice of hospice care and seek to determine what role their physician played in their decision. I would also present the patient with a series of cards listing those obstacles I had previously identified and ask them to arrange the cards in order of increasing personal importance. I feel this method would allow me to gather both quantitative and qualitative data regarding this vulnerable patient population in a sensitive and respectful manner.

The finished product of my research would be an integrated, two-part analysis of this data, plus suggestions as to how the medical community might enable patients to identify potential obstacles when considering hospice care. The qualitative component would include my observations and conclusions from the conversations with hospice patients. Though less statistical than some methods of research, a better descriptive understanding of common pathways is necessary to improve patient care, and I would seek direction from Dr. Jean McSweeney. a professor of qualitative research in the COPH, in identifying and describing common themes.  The quantitative component would involve analyzing the data from the obstacle rankings and identifying overall trends. I would also attempt to delineate any pattern differences in prioritization between age, gender. and race. The ultimate goal of this project is not to convince more people to enter hospice care, but rather to assist and equip patients with a terminal diagnosis in making a very personal decision.

Problem - Breast cancer remains the number one cause of death among women in the United States. One in eight women will develop malignant breast disease in their lifetime. This risk significantly increases with an affected first degree relative or a strong family history of gynecological malignancies. Consequently, many breast cancer patients often express concern about the susceptibility of their daughters. According to current Centers for Disease Control and Prevention estimates, 5-10% of all breast cancers are attributed to the BRCA1 and BRCA2 genes. While BRCA1/BRCA2 testing allows physicians to more accurately identify the heritability of disease in some women, BRCA—positive patients are frequently ambivalent or fearful about genetic testing as it relates to their adolescent daughters.

Statement of Intent — This study will explore the ethical issues surrounding BRCA1/BRCA2 testing in the adolescent daughters of breast cancer patients as a preventative health measure.

Guiding Research Questions —
• What barriers do breast cancer patients list concerning BRCA1/BRCA2 testing in their adolescent daughters?
• Will adolescents susceptible to breast cancer benefit from preemptive genetic testing? If so, at what age should testing begin?
• Are positive test results enough to necessitate prophylactic treatment?
• How does the anticipation of a potentially lethal disease affect the adolescent psyche?

Research Procedures — Standardized surveys will be administered to participating Arkansas Cancer Research Center (ACRC) breast cancer patients with adolescent daughters (ages 11-17) to assess their perspectives and attitudes toward genetic testing. Interviews will be conducted with ACRC physicians, UAMS genetic counselors, and psychiatrists concerning the medical and psychological impacts of disease anticipation. A literature review will also be performed. Additional sources of information may include Centers for Disease Control and Prevention, Arkansas BreastCare, and the Arkansas Department of Health.
 

The siblings of children with cancer face a unique dilemma in that they must cope with stressors that other children their age can't imagine. In addition to concerns about the welfare of their brother or sister, the child's parents frequently are physically and emotionally unavailable to the child. While considerable efforts are made for the hospitalized patient to be able to play and remain involved with age-appropriate activities, the sibling's daily routines are often disrupted in order to accommodate the increased demands placed upon the parents. Younger children may not understand basic aspects of cancer, such as the fact that cancer is not contagious, and therefore may require education in order to avoid unnecessary anxiety. This project will examine the following aspects of the psychosocial concerns for siblings of childhood cancer patients.
- Examine existing research on the topic.
- Examine existing support programs in the United States.
- Examine the average number and geographic distribution of siblings of childhood cancer patients in Arkansas.
- Examine existing programs that address sibling's needs in Arkansas.
- Evaluate the need for a dedicated support program in Arkansas.
- Propose program goals and operating parameters to fulfill the unmet needs of Arkansas children.

I would like to briefly explain my motivation for the proposed study: upon graduation, I will be pursuing a career in primary care/family medicine. It is deceptively apparent that I would have minimal involvement with cancer patients and their disease as this requires specialized care by trained oncologists. However, I have only to refer to personal experience to know that this is not the case. Primary care doctors are an integral part of cancer patient care, beginning with the suspicion/diagnosis of cancer, until the end of life. My father-in-law was diagnosed with lymphoma in December of 1995 and passed away two years ago. His final year of life was complicated by numerous medical emergencies, hospital admits, urgent clinic visits - all of which were handled by his longtime family physician. This doctor knew his case and history better than anyone and was a necessary link in providing team care. Even more than this, he was a source of comfort and familiarity to the patient and his family. This experience enabled me to see that PCPs do continue to playa primary role in patient care, even past the diagnosis of cancer.

Patient-related barriers to pain control in oncology patients have been identified in numerous studies. These barriers can range from personal patient attributes, to socially or culturally dependent beliefs, to familial biases. These barriers keep patients from accurately reporting or appropriately treating their pain.

A recent randomized controlled trial by Wright Oliver et. aI. published in the Journal of Clinical Oncology compared a standardized instruction (control group) on controlling pain to an individualized education and coaching session (experimental group). The study found that while both groups attained advances in knowledge about pain control, the experimental group had statistically significant reductions in average pain, pain impairment, and pain frequency.

Although this study found a significant improvement in patients' management of pain it did not characterize the specific reasons for the improvement. The study that I am proposing would further evaluate the factors that affect improvement in patients self! management of pain.

This would be done by providing a control group that would receive the standard form for ACRC patients on cancer pain and its management while having two other experimental arms. Experimental arm 1 would consist of patients receiving an enhanced form that would seek not only to educate patients about pain management but also to instruct them on how to deal with physicians and nurses in regard to reporting and receiving pain medication. Experimental arm 2 would use an individualized coaching sessions to achieve the same goals as arm 1.

This study will evaluate the effectiveness and degree of improvement, if any, that is provided by personal interaction with a patient educator. It is my hope that this study may lead to better patient education and pain management at the ACRC.

3. Byrne MM. Evaluating the Findings of Qualitative Research. AORN Journal. March 2001; 73,3; 703-704,706.

People faced with the diagnosis of cancer must deal with issues which few health care providers can truly understand, unless facing these issues themselves. This holds true regardless of how many life changing diagnoses a physician might make, or how complete their understanding of the disease process.

Different groups will be interviewed and analyzed by age, sex, and particularly ethnicity since many studies have suggested that gender and cultural backgrounds influence the perception, diagnosis and treatment aspects of cancer. The various Arkansas Cancer Research Center Bone Marrow Transplant Support Groups will be utilized as sources of information to empower this study. Individuals from various ACRC care teams, and support staff, as well as selective journal articles will also be employed to gather information on this topic. I have already contacted Harriet Farly, an ACRC social worker involved with these groups, regarding outside involvement in the weekly support groups organized by the ACRC. She has offered her assistance in the gathering of this information to complete the study. Individual patients from these groups, if agreeable, will be interviewed for information valuable to this study. Since the Bone Marrow Transplant Support Groups will be utilized for gathering information, cancers specific for the use of bone marrow transplant as a treatment, namely multiple myeloma. will be the focus.

The goal is to gain a better understanding, for patients and caregivers, of how cancer patients' perspectives change various aspects of their lives following the diagnosis, prognosis, treatment, and life after treatment of their specific cancer. A pamphlet shaped by much of the information from this studycould be made for future participants of these support groups in order to further facilitate patient care and education.

1999/2000

Title

Family Presence During Attempted Resuscitation

Abstract

It has been debated recently whether or not relatives should be allowed present during the attempted resuscitation of their loved one. Medical professionals from eighty-one hospitals in Arkansas were surveyed. Two hundred and twenty-three surveys were returned. Eighty-five respondents said they would consider allowing family member present during CPR. One hundred and thirty-one respondents said they would not consider allowing family presence. The most common reason given for not allowing family member presence was that the family was unprepared or that the CPR scene was too traumatic for family presence. However, other studies have shown that with some preparation and support some family members are helped in their grieving process by being allowed presence. Medical paternalism is not a valid reason for the routine exclusion of families from the resuscitation room.

1998/1999

Title

A STRUCTURED DISCUSSION OF ETHICAL ISSUES BETWEEN JUNIOR CLERKS AND ADVANCED SURGICAL RESIDENTS

Abstract

A forum was created to provide an opportunity for junior medical students on their surgery rotation to discuss ethical issues with senior surgical residents. A validated survey was distributed to the students after the first month of the rotation that assessed emotional stress experienced by them during the month. Structured discussions between the students and senior residents were conducted by the Lee Scholar with assistance from a physician-ethicist from the Division of Medical Humanities. Discussion focused on the results of the survey and on a number of ethical issues typically faced by junior clerks. A control group received the survey but no intervention.

Discussion sessions were lively, rich, and deep. Communication between clerks and residents was a recurring theme of the discussions. An assessment survey was conducted after all the sessions had been held. Subjective ratings of the experience were positive. Results of the survey indicated reduction of stress among the participating students together with an increase in stress among the controls, though the results for this small sample size were not statistically significant.

1997/1998

Title

Is Enforced Contraception Ethically Usable in the Acutely Mentally Ill?

Abstract

Due either to their disease or their medications, some acutely incapacitated mental patients experience a heightened sexuality. They are hospitalized with others in the same condition. Research and experience demonstrate that sexual encounters happen in such settings. The female patient is at risk for two physical consequences of unmodified sexual intercourse--pregnancy and sexually transmitted disease. Modern contraceptive techniques have all but removed the possibility of pregnancy if used properly. Since such incapacitated patients are already being restrained and treated against their will for the protection of themselves or others, is it ethical to also protect them from a pregnancy for which they are not prepared?

This paper explores the issues involved, looks at what others have written regarding this issue, and formulates an opinion from a framework based on the Christian faith.

1996/1997

Title

Supporting Breast Cancer Survivors -- What Is Enough?

Abstract

Medical advances have allowed physicians to repair breast cancer patients’ physical deformities in the wake of the disease. However, countless studies have concluded that there are voids in treatment which must be equally attended - namely the psychosocial, the emotional, and the spiritual. Support groups have grown in numbers and in their quality of service over the years, but is the breast cancer patient aware of all the services available? Are physicians aware of what is available for their patients? Are family members and spouses encouraged to seek support as well? Do rural patients have access to similar outreach programs as urban patients? This pilot study was designed to explore some of these issues in order to better understand the needs of future breast cancer patients.