bluuebunny/crossref_metadata_2025 huggingface dataset:
Ketamine-fentanyl-midazolam infusion for the control of symptoms in terminal life care
Authors: Berger Jack M. , Ryan Angèle , Vadivelu Nalini , Merriam Pamela , Rever Linda , Harrison Patricia
Published: May 2006

In this report, we describe nine terminally ill patients with metastatic cancer who were treated with an intravenous infusion consisting of ketamine (2 mg/ml)/fentanyl (5α g/ml)/midazolam (0.1 mg/ml) (K/F/M) to control pain after traditional analgesic therapies were unsuccessful. In addition to pain, all patients exhibited some symptoms of cognitive compromise and agitation. After initiation of the K/F/M infusion, all patients exhibited some degree of qualitative improvement in these symptoms as well as in overall pain control. We feel that these observations warrant reporting of the efficacy of this infusion for the treatment of uncontrolled pain and agitation in terminally ill patients when the traditional methods of pain control are inadequate.
Who are our clients? A profile of a community-based Buddhist hospice
Authors: McGrath Pam
Published: May 2006

One of the ongoing challenges for those involved in the hospice movement is to find ways of effectively extending the provision of hospice services to all in need. Pragmatic, empirical research that provides information on the present and potential hospice population is essential to foster the development of services if this challenge is to be met. This discussion presents a descriptive profile of the clients of a community-based Buddhist hospice in Brisbane, Australia, known as the Karuna Hospice Service (KHS). This descriptive profile makes a contribution to the important task of establishing where we currently are, in the hope that this will begin to delineate where fresh energy needs to be directed in the future.
Control theory in dying: What do we know?
Authors: Redding Susan
Published: May 2006

As we try to develop appropriate models for end-of-life care, it is important to review theoretical applications as they relate to current models of care. It is also vital to listen carefully to what patients and their family caregivers tell us about their needs at the end of life. This article explores the issue of control: its application to wellness at the end of life, and patient and family caregiver perceptions about end-of-life control. Interventions and implications for professional caregivers are proposed.
Turning toward death together: Conversation in mortal time
Authors: McQuellon Richard P. , Cowan Michael A.
Published: May 2006

Death has a different meaning for everyone it touches, and these meanings have serious impact on how each person communicates with others as they deal with it together. This paper is a reflection on clinical experience in dealing with the dying and their caregivers in a comprehensive cancer center. By “mortal time,” we mean the psychological state human beings enter when confronted with the prospect of death. Our focus is on a particular and powerful instance of the entry into mortal time—the diagnosis of a terminal illness. The experience of mortal time is profoundly subjective. Authentic conversation has the power not only to enhance how people cope practically with dying, but to illuminate and enrich the very meaning of life for patients and caregivers alike, as they enter the sacred moment of mortal time together.
The relationship of pain and suffering in a hospice population
Authors: Baines Barry K. , Norlander Linda
Published: May 2006

Although suffering is frequently encountered in the hospice setting, few studies examine this condition. The purpose of this study was to examine the relationship between terminally ill hospice patient's pain and their physical, spiritual, and personal or family suffering. Using a tool developed to measure suffering in those categories, a convenience sample of 92 patients were asked to rate their worst pain within the last 24 hours, and to rate their suffering at the time of the interview. All items were rated on a 0-10 Numeric Intensity Scale. Pain scores and suffering scores were divided into four categories; no pain or no suffering (0), mild pain or mild suffering (1-3), moderate pain or moderate suffering (4-6), and severe pain or severe suffering (7-10). Mean scores were compared for pain and suffering. More patients experienced suffering than pain. The highest mean suffering scores occurred in the severe pain category. Correlation coefficients for each suffering and pain category were also calculated. Results indicated a statistically significant correlation only between severe pain and suffering in the categories of loss of enjoyment of life, unfinished business, and concern for loved ones. Data indicated that patients view pain and suffering as separate entities. Further research is needed to better define the relationship between pain and suffering in order to improve assessment and intervention in a hospice setting.
The development of a hospice junior volunteer program
Authors: Letizia Marijo , Zerby Barbara , Hammer Kay , Tinnon Wendy
Published: May 2006

In the United States, volunteer services are mandated by hospice Medicare guidelines; volunteers provide a very valuable service to patients, families, and other members of the interdisciplinary team. A hospice junior volunteer program can engage teens in the care of the dying in our communities. This article describes the development and implementation of a junior volunteer program at St. Thomas Hospice in Hinsdale, Illinois.
The many faces of pain for older, dying adults
Authors: Gibson Margaret C. , Schroder Cori
Published: May 2006

An integration of knowledge from the fields of geriatrics, pain management, and palliative care is needed to ensure adequate pain control for the older adult who is dying. An overview is provided of the multiple factors (i.e. , chronic illness, malignant disease, care procedures, emotional and cognitive status, response of others) that can cause and exacerbate pain at the end of life for the elderly. Treatment considerations are discussed and an illustrative case study is presented.
Transdermal fentanyl in the hospice: A survey of rescue dosing and pain control
Authors: Robards Marti
Published: May 2006

The case records of 25 patients who received transdermal fentanyl as a primary analgesic during routine hospice care were surveyed for pain control and rescue medication use. The majority of patients (76 percent) had cancer-related pain and were treated in hospice for an average of approximately 30 days. Most received oral medications for supplemental rescue analgesia. During the sampling periods, on average, pain intensity was reported as mild. Over the same periods, patients required a mean of 6.1 (± 0.7) doses of rescue medication per day, with a range of zero to 12 doses per day. Five patients required rescue dosing every two hours on some treatment days. Although adequate pain control was generally accomplished with transdermal fentanyl in the group as a whole, the frequency of rescue dosing outside of the initial titration period appears unacceptably high.
Treatment options to manage pain at the end of life
Authors: Wrede-Seaman Linda D.
Published: May 2006

Experts believe that the time preceding death can be comfortable if people die without pain, with dignity, and in their own way. Given current analgesic options, psychological and spiritual interventions, and an effective health care delivery system, all these goals are achievable. Pain management is one of the most important aspects of end-of-life care. Effective analgesics should be chosen carefully, in keeping with the patient’s overall condition, level and stability of pain, and specific patient/family wishes. Ideally, analgesics should be initiated as soon as appropriate. The variety of routes of delivery, ranging from oral to transdermal or epidural to intrathecal, allows a selection that will achieve comfort and yet be least troublesome for the caregiver and patient. As the palliative care specialty continues to grow in the United States, it is imperative that health care professionals in the field develop basic to advanced primers to assist in equipping colleagues in all specialties with an understanding of effective opioid use, as well as the multidimensional aspects of helping patients achieve comfort at the end of life.
Coping strategies used in residential hospice settings: Findings from a national study
Authors: Evans William Myles , Bibeau Daniel L. , Conley Kathleen Mullen
Published: May 2006

The purpose of this study was to explore professional caregivers’ coping strategies for dealing with the deaths of patients in residential hospices in the United States. Using the Guide to the Nation’s Hospices, 1996-97, purely residential hospices were identified and invited to participate in the study. Employees at each residential hospice were asked to complete the Ways of Coping Questionnaire. Results indicated that positive reappraisal coping was the most frequently used coping strategy. Employees dissatisfied with the coping experience reported greater use of confrontive coping, escape-avoidance coping, and accepting responsibility strategies. The findings suggest that in-service training related to coping strategies and environmental interventions may help in strengthening the coping responses of residential hospice staff.
Anesthesia practitioner involvement, invasive treatments, and need in hospice pain management: A survey of patient care coordinators
Authors: Lukowski Lillian I. , Murry Tim , Hall Jacqueline , Algozzine Robert F.
Published: May 2006

Pain management is one of the major concerns for the terminal patient. The hospice care team is a highly trained group of health care providers in the area of symptom control, including pain management, for the dying patient. Anesthesia providers also specialize in pain control. The purposes of this study were to survey hospice patient care coordinators to gain an understanding of anesthesia practitioners’ involvement with hospice patients, hospice patients’ access to anesthesia pain management services, and hospice patient care coordinators’ attitudes toward the necessity of anesthesia pain management services for the hospice community. A questionnaire was developed to assess these issues. In general, the findings reflected minimal anesthesia practitioner involvement in the hospice community. Fifty-two percent reported that patients could benefit from invasive treatments offered by anesthesia practitioners. Forty percent responded that more patients could be considered as candidates for invasive pain management techniques if procedures were performed in the patient’s home or hospice. Access to anesthesia pain management services was limited by distance to pain clinics and anesthesia practitioners, and more anesthesia pain management services were needed for hospice patients in smaller communities. Cost of anesthesia pain management was frequently proposed as a prohibitive factor.
A longitudinal study of pain in hospice and pre-hospice patients
Authors: Owens Michael R. , Simmons Bernadette , Gibson Pamela S. , Weeks Dorothy
Published: May 2006

Pain continues to be a very formidable foe in the care of the hospice patient. The incidence among hospice admissions may range from 50 to 80 percent. With such a high initial incidence of pain, the rapidity with which pain can be controlled becomes a very high priority for the hospice effort. The assessment and management of pain in a home-based hospice program presents some unique problems—and opportunities, in that much of this work is done by hospice nurses on site, rather than by the physician, who might remain quite removed from the process. In the study described below, 250 consecutive admissions to either a hospice, or pre-hospice (bridge) program were assessed for pain on admission. Those with pain scores of 5 or greater (on a 1 to 10 scale) were followed daily for 15 days by phone to reassess pain and treatment effects. Of the 250 consecutive patients surveyed, 41 (16 percent) gave pain scores of 5 or greater. Mean pain scores for the 41 patients dropped to < 5 within 24 hours of admission.
Alleviating the suffering of seriously ill children
Authors: Kane Javier R. , Primomo Marion
Published: May 2006

Modern medicine has largely focused on the physical aspects of disease, aggressively attacking the illness, often at the expense of caring for pain and suffering. Medical interventions based solely on the diagnosis and treatment of disease limit the medical care of the severely ill child. Such an approach is particularly detrimental when caring for the terminally ill. Successful care of children with chronic, life-threatening, or terminal illnesses requires a comprehensive assessment of their physical, psychological, and spiritual needs as well as a process of collaboration between members of the multiple disciplines involved in the care of the patient and the family unit as a whole. Supportive/palliative care serves as a bridge between a scientific (disease-oriented) and humanistic (person-oriented) approach to patient care. Bridging this gap early in the course of life-threatening illness is essential for successful palliative intervention to relieve suffering and improve the quality of life for the child and his or her family. A model that introduces supportive, palliative, and hospice services into the mainstream of medical therapy is emphasized as a standard for the care of all children with significant chronic, life-threatening, or terminal illness. This article expands on a previous paper published in the American Journal of Hospice & Palliative Care (Kane JR, Barber RG, Jordan M, et al. : Supportive/palliative care of children suffering from life-threatening and terminal illness. May/June 2000; 17(3): 165-172).
Pharmacy student training in United States hospices
Authors: Herndon Christopher M. , Fike David S. , Anderson Allan C. , Dole Ernest J.
Published: May 2006

Hospice is a quickly growing field in health care in the United States. As the pharmacist’s role in providing patient care to persons at the end of life increases, considerations should be given for training pharmacy students in this area. The objectives of this study were to examine the frequency of pharmacy student education and training among United States hospice organizations as well as to describe factors of hospice organizations that are associated with pharmacy student training. This is the first study of which we are aware to address the availability of experiential rotations for pharmacy students in hospice programs. A one-page questionnaire was mailed to 3,762 hospice organizations with addresses obtained from the National Hospice and Palliative Care Organization (NHPCO). Following two mailings, eight weeks apart, 907 responses were obtained. Ninety-four (10 percent) hospices trained pharmacy students, 246 (27 percent) trained medical students, 357 (39 percent) trained social work students, and 623 (69 percent) trained nursing students. These results indicate that the experiential training needs of United States pharmacy students are being addressed. However, further study is warranted to describe the various experiences of pharmacy students within the hospice setting.
Methylphenidate for fatigue in advanced cancer: A prospective open-label pilot study
Authors: Sarhill Nabeel , Walsh Declan , Nelson Kristine A. , Homsi Jade , LeGrand Susan , Davis Mellar P.
Published: May 2006

Psychostimulants such as methylphenidate are used for fatigue in cancer patients. We report a prospective, open-label, pilot study of the successful use of methylphenidate to treat fatigue in nine of 11 consecutive patients with advanced cancer. Seven had received radiation or chemotherapy, a median of three weeks (range from one to 30 weeks) prior to methylphenidate. A rapid onset of benefit was noted, even in the presence of mild anemia. Sedation and pain also improved in some. Only one patient had side effects severe enough to stop the medication.
The Harry R. Horvitz Center for Palliative Medicine (1987-1999): Development of a novel comprehensive integrated program
Authors: Walsh Declan
Published: May 2006

The Cleveland Clinic is a large multi-specialty group practice. The need for a palliative care program was identified and the program started in 1987. A key concept has been that the existing structure of hospice care as defined by Medicare is insufficient to address the needs of patients with incurable disease. The field of palliative medicine implies physician expertise in several key areas: (1) communication; (2) decision-making; (3) management of complications; (4) symptom control; (5) care of the dying; and (6) psychosocial care. The development of the program (the first in the United States) since 1987 has put in place the following major services, listed consecutively: (1) hospital consultation service; (2) outpatient clinics; (3) acute care inpatient service; (4) hospice and home care service; (5) acute-care palliative medicine inpatient unit; and (6) hospice inpatient facility. Program development has meant that a new program has been introduced approximately every 18 months since the start of the program. This has considerable implications for staffing, the management of change, and competition for scarce resources within a contracting health care budget.

The staffing of the program has focused on developing specialized attending physicians using a multidisciplinary approach dedicated to enhancing the role of nursing in the field. The major budgeted areas are (1) the acute-care palliative medicine unit, and (2) the hospice and home care service. Specific commitment has been made to research and education because of the desire to develop an intellectual basis for the practice of palliative medicine. This requires structured activities in both areas with a systematic approach to research and education.

The complexity of developing a service should not be underestimated. There has been consistent support for the program by senior leadership within the Cleveland Clinic Foundation, including the cancer center. The major lessons learned during program development have been: (1) to focus on quality of patient care; (2) to commit to academic endeavor in research and education; (3) to secure institutional commitment to program development; (4) to establish a positive, proactive, businesslike approach; (5) to defend budget and personnel, albeit within a difficult time in health care; and (6) to commit to success, i.e. , never promise anything on which you do not deliver. The future development of post-acute-care services serving predominantly the chronically ill elderly population suggest an expanded administrative and conceptual role for the future development of palliative medicine to help serve the needs of the aging population in the United States.
Ibuprofen to rofecoxib: What does it all mean and what do I do now?
Authors: Varga James , Dickman Andrew
Published: May 2006

NSAIDs are used throughout the World Health Organization three-step analgesic ladder, and are indicated for pain in all stages of malignancy. Side-effects are common with NSAIDs. Much has been written about NSAIDs and COX, since the discovery of COX-1 and COX-2 isoforms. How do you choose the appropriate NSAID? The choice of NSAID continues to be dependent upon associated gastroduodenal toxicity and the related risk factors of individual patients. Choosing the appropriate NSAID should minimize the likelihood of needing additional medications to manage adverse effects and symptoms caused by the NSAID therapy itself.
Internet resources for end-of-life care
Authors: VandeKieft Gregg K. , Ogle Karen S. , Wang Tammy
Published: May 2006

Numerous publications highlight the need for critically evaluating medical information on the Internet. This review identifies Internet resources specifically dedicated to end-of-life care. An annotated review of key webbased resources is presented. The Internet has the potential to catalyze the doctor-patient relationship toward true “partnership.” Physicians and patients will benefit from using a focused research strategy.
Assessment of delirium in advanced cancer: The use of the bedside confusion scale
Authors: Sarhill Nabeel , Walsh Declan , Nelson Kristine A. , LeGrand Susan , Davis Mellar P.
Published: May 2006

We conducted a prospective assessment of 50 consecutive admissions to an acute palliative medicine unit, using the bedside confusion scale (BSCS). Information including age, gender, diagnosis, and the presence or absence of brain metastasis was collected. Possible predisposing factors for delirium were recorded. Forty-one of 50 consecutive admissions were screened. There were 18 men and 23 women with a median age of 65 years (average: 60-75). The most common diagnoses among all were lung and breast cancer. Thirteen patients were delirious (BSCS score of32), 10 borderline (BSCS score = 1), and 21 normal (BSCS score = 0). Brain metastases and drugs appeared to be the most common predisposing factors of delirium. Forty percent of those that were delirious received haloperidol as symptomatic treatment. The BSCS is simple, portable, valid, quick, and easy to use by any medical team member. Delirium is common in hospitalized patients with advanced cancer.
Not ready for hospice: Characteristics of patients in a pre-hospice program
Authors: Hayley Déon Cox , Muir J. Cameron , Stocking Carol , Hougham Gavin , Sachs Greg A.
Published: May 2006

Context: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that many patients did not make the transition.

Objectives: To understand more about the transition to hospice and the functions of a pre-hospice program, this paper compares patients who enrolled in hospice with those who died in the pre-hospice program.

Design, setting, and patients: Data were collected from a retrospective review of the charts of 123 consecutive patients who enrolled in a prehospice program between January 1, 1995, and December 31, 1996.

Main outcome measures: The patient’s decision to transfer to home hospice or (perhaps, by not making a decision) to remain enrolled in the pre-hospice program until death.

Results: At the end of the research period, 38 patients had transferred to hospice and 36 had died without transfer. The remaining 49 patients had uncertain outcomes at the end of the research period. Patients who transferred to hospice were older (P = .02) and more likely to have secondary insurance (P = .05). In addition, those who enrolled in hospice were more likely to live alone (P = .03) and have psychosocial concerns noted by staff on admission (P = .05).

Conclusions: Many patients died in this program that was designed only for transition to hospice. We found statistically significant differences characterizing the groups associated with transferring to hospice. Further studies to find out why these differences exist will be important in order to provide excellent end-of-life care for more people.
The role of physical, occupational, and speech therapy in hospice: Patient empowerment
Authors: Frost Miriam
Published: May 2006

The use of physical, occupational, and speech therapy is a growing trend in hospice. The purpose of this paper is to define the role of the physical, occupational, and speech therapist as part of the hospice team in the context of the various therapies’ objectives. A case study is presented and clinical implications are discussed.
Modafinil: A gift to portmanteau
Authors: Cox Joshua M. , Pappagallo Marco
Published: May 2006

This article reviews the use of modafinil in palliative care, and its use in promoting vigilance and wakefulness. Modafinil’s therapeutic and chemical class, mechanism of action, pharmacokinetics, indications, dosage, side effects, and drug interactions are also discussed. Modafinil seems to fit the requirements of portmanteau, using one drug to treat multiple symptoms.
Is it appropriate to screen palliative care patients for depression?
Authors: Lloyd-Williams Mari
Published: May 2006

It is estimated that approximately 25 percent of palliative care patients have symptoms of depression, but much of this depression is not identified and therefore not treated. Reasons for non-identification include the difficulties of distinguishing between what can be called “appropriate sadness” and depression at the end of life and also the nondisclosure by patients of their own mood. In an effort to improve the early detection of depression, patients of all age groups referred to a clinical nurse specialist team within a six-month period were invited to complete the Edinburgh Postnatal Depression Scale (EPDS); the scale was found in an earlier study to have a sensitivity and specificity of above 80 percent at a cutoff threshold of 13 or above. The present study found that 34 percent of patients scored at or above the previously validated threshold of 13, and that younger patients (under age 50) were twice as likely to score above the threshold than were older patients (over age 70). The scale was easy to complete by patients, and staff found it useful as part of their initial assessment of patients. It is suggested that such a tool may aid the early detection and treatment of depression in palliative care patients.
Creating a hospice pharmacy and therapeutics committee
Authors: Snapp Janet , Kelley Debra , Gutgsell Terence L.
Published: May 2006

Implementing a Pharmacy and Therapeutics Committee (P&T) as a management strategy for Hospice of the Bluegrass in Lexington, Kentucky, has proven to be effective in reducing costs and improving patient outcomes. Early efforts of the committee yielded the establishment of protocols and guidelines, educational programs, pharmacy newsletters for nurses, and patient education material. In the spring of 2000, Hospice of the Bluegrass developed a preferred drug list (PDL) consisting of the medications it considered essential for effective pain and symptom control.

The addition of a clinical pharmacist and a P&T committee has resulted in significant cost savings and improved pharmacotherapeutic care for patients of Hospice of the Bluegrass. This model is an option for any hospice looking to achieve the same outcomes.
Teaching end-of-life issues: Current status in United Kingdom and United States medical schools
Authors: Dickinson George E. , Field David
Published: May 2006

Our objective was to determine how broadly end-of-life issues are represented in the undergraduate medical school curricula of the United Kingdom (UK) and the United States (US). Mailed surveys yielded response rates of 100 percent in the UK and 92 percent in the US. With one exception, all medical schools in the survey offered some exposure to dying, death, and bereavement and most addressed the topic of palliative care. Hospice involvement was found in 96 percent of UK medical schools but in only 50 percent of US schools. Overall, the UK appears to provide more exposure to end-of-life issues in medical schools, although the US appears to be moving in that direction.
Using caregivers-as-proxies to retrospectively assess and measure quality of dying of palliative care clients
Authors: Bridge Marie , Roughton D. I. , Lewis Susan , Barelds Janine , Brenton Sava , Cotter Sherree , Hagebols Mary-Lou , Woolman Kirsty , Annells Merilyn , Koch Tina
Published: May 2006

This study evaluated two quality-of-life assessment and measurement tools, the Client Generated Index and the McGill Quality of Life questionnaire, within palliative care nursing. Primarily tested was the feasibility of the tools to assess clients’ QOL at admission and, if necessary, when their condition altered. The reliability of the tools has previously been ascertained. Additionally, quality of dying during the last two days of life for 14 participants who died during the study was assessed and measured retrospectively by these tools, using the client’s nominated care-giver as proxy for the client. It is this second focus that we report on here. The reasons why proxy assessment and measurement of client QOD was not useful or feasible are discussed.
Proactive identification of seizure risk improves terminal care
Authors: Baldwin Kathy , Miller Lisa , Scott Joseph B.
Published: May 2006

Seizures are a common neurologic consequence of various etiologies in the end-stage cancer patient. Because dying cancer patients and their families are often coping with new challenges daily, any intervention that can prevent further patient or family discomfort should be implemented. The purpose of this study was to evaluate four pharmacy interventions aimed at improving nursing care to cancer patients at a facility for the terminally ill. The four interventions were development of a seizure risk factor assessment toll, assembly or availability of a diazepam seizure kit, nursing education via in-service training, and development of a manual for nursing stations. Successful implementation of this project indicated that nurses perceived an empowerment in improving quality of life of their patients.
An investigation into the use of palliative care services by patients with prostate cancer
Authors: Green James S.A.
Published: May 2006

The use of palliative services by prostate cancer patients was assessed in relation to other cancer patients and as a proportion of men diagnosed with prostate cancer.

Retrospective analysis of palliative care referral and inpatient and outpatient activity was undertaken in respect to patients with nine types of cancer. A cohort of men diagnosed with prostate cancer in 1993 was followed for five years. The records of those that died during this period were reviewed to confirm if they had received hospice care.

Of the 118 men dying of prostate cancer, 25.4 percent used hospice services, 23 percent used the hospice at home services (for an average of 68.8 days), while 7 percent used day-care services (for an average of 8.25 days). Prostate cancer patients formed the third largest cancer referral group to hospital-based palliative care services (9.5 percent). They had the third longest survival time from referral (3.8 months) and the oldest average age of death of any group. Lower than average inpatient stays, coupled with the highest average length of stay, led to the third highest use of inpatient services by patients with prostate cancer.

We concluded that the morbidity from prostate cancer leads to a high use of palliative services. This significant use of resources should be included in comparisons assessing and planning health care strategies for prostate cancer.
Use of recombinant factor VIIa to control bleeding in an adolescent male with severe hemophilia A, HIV, thrombocytopenia, hepatitis C, and end-stage liver disease
Authors: Puetz John J. , Bouhasin John D.
Published: May 2006

Few options are available to treat hemorrhaging during the palliative care of patients. Blood products, such as plasma and platelets, are difficult to transfuse in the home or hospice setting. What is needed is a product that can be given in the home setting for effective control of hemorrhaging in patients with various types of coagulopathies. Unfortunately, no such product currently exists. One agent that may be beneficial in this clinical setting is recombinant factor VIIa. This factor was approved initially for controlling hemorrhaging in patients with hemophilia who have developed antibodies against factor VIII, known as inhibitors. It subsequently has been found to control bleeding in several other clinical situations. We will describe our use of this agent during the palliative care of a patient with numerous insults to his coagulation system.
Family support for hospice caregivers
Authors: Patterson Lisa B. , Dorfman Lorraine T.
Published: May 2006

This qualitative study investigated family supports for primary care-givers of hospice patients, as perceived by both the primary caregiver and other family members involved in patient care. Family support was conceptualized in terms of (1) who offers support; (2) types of support; (3) frequency of support; (4) family communication; and (5) change in family relationship during the caregiving process. Twenty-four interviews were conducted with 10 primary caregivers and six family members identified by the caregiver as the person they could most call on for help. Interviews were conducted shortly after admission to hospice and approximately two months after the death of the hospice patient. Primary caregivers and other family members involved in care agreed that the primary caregiver provided most care. They also agreed that family members provided instrumental and emotional support, the frequency of assistance was appropriate, and families had grown closer since learning of the terminal illness. There was less agreement regarding family communication during the caregiving process. Implications for interventions with families of hospice patients are discussed.
Predictors of live hospice discharge: Data from the National Home and Hospice Care Survey (NHHCS)
Authors: Kutner Jean S. , Blake Marcia , Meyer Sue A.
Published: May 2006

In the context of the current regulatory environment, patients may be discharged from hospice if their condition stabilizes or improves over time and the certifying physician is unable to provide a conscientious recertification of the six-month prognosis. Little is known about the characteristics or outcomes of patients who are determined by physicians to no longer be eligible for hospice care.

This retrospective study was designed to characterize the rates and predictors of live hospice discharge using data from the 1996 and 1998 National Home and Hospice Care Survey (NHHCS). We compare records of live hospice discharge with hospice discharges due to death from the discharge patient files of the 1996 and the 1998 NHHCS.

Of the 807,733 patients in the combined 1996 and 1998 NHHCS discharge patient file who met study inclusion criteria, 761,858 (94 percent) were deceased and 45,875 (6 percent) were discharged alive. Those who were discharged alive were more likely to be female, have received hospice care for more than 60 days, and to have had a noncancer diagnosis, particularly advanced cardiopulmonary or neurologic disease. Mean age and total number of assistive medical devices used did not differ significantly between patients who were discharged alive and those who died in hospice care. Factors most associated with live hospice discharge, using bivariate analyses, were length of service greater than 60 days (OR, 6.60; 95 percent CI, 6.47-6.73), cardiopulmonary diagnosis (OR, 3.24; 95 percent CI, 3.19-3.30), and neurologic diagnosis (OR, 2.73; 95 percent CI, 2.67-2.79). Multivariate logistic regression identified length of service greater than 60 days, cardiopulmonary diagnosis, neurologic diagnosis, female gender, worse functional status, and living in an institutional setting as being independently associated with live hospice discharge.

We found that patients who were discharged alive from hospice care were more likely to have longer lengths of service, noncancer diagnoses, and better functional status than those who died while receiving hospice care. Age was not associated with discharge disposition. Given the demonstrated differences between these patients and those who died while receiving hospice care, these data provide further impetus for careful study of the appropriateness of current hospice eligibility criteria, the determinants of hospice discharge and, most important, the outcomes of patients who are discharged alive from hospice and the impact of hospice discharge on patients and their families.
Antemortem care in an afternoon: A successful four-hour curriculum for third-year medical students
Authors: Jackson W. Clay , Connor Pamela D. , Tavernier Laura
Published: May 2006

Numerous well-designed studies have shown that patients near the end of life often receive substandard palliative care. Medical students have expressed a strong interest in antemortem care; however, palliative medicine education remains poorly integrated into the overall curriculum at most medical institutions in the United States. In response to this need, a palliative medicine curriculum has been developed for medical students in the required third-year clerkship in family medicine at the University of Tennessee Health Sciences Center. The implementation of this curriculum resulted in a statistically significant increase in student competence (as measured by a standardized pretest and post-test) and a significant trend in student confidence (as measured by a single-item Likert scale). The curriculum was popular with students, and encouraged many of them to request hospice clinical experiences during their family medicine clerkship, or to register for the elective fourth-year clerkship in palliative medicine.
Oxidized cellulose dressings for persistent bleeding from a superficial malignant tumor
Authors: Lagman Ruth , Walsh Declan , Day Kathy
Published: May 2006

Persistent bleeding from superficial malignant tumors, although uncommon, can be a major and distressing problem. Management includes frequent skilled dressing changes, correction of clotting abnormalities, and maintaining blood volume by repeated transfusions. We report a case where application of oxidized regenerated cellulose surgical dressing appeared to contribute to successful hemostasis.
Presence and severity of constipation in hospice patients with advanced cancer
Authors: McMillan Susan C.
Published: May 2006

Although constipation is a problem commonly seen in hospice patients it is not often addressed in the literature as a target symptom needing management. The purpose of this study was to assess the levels of self-reported constipation in a group of patients with advanced cancer at admission to hospice and two weeks and one month after admission. The constipation assessment scale (CAS) measured the presence and intensity of constipation. Comparisons between time points were not possible, but trends seem to indicate that patient symptoms are not being successfully managed.
Dying to meet you: Facing mortality and enabling patient styles
Authors: Stolick Matt
Published: May 2006

This paper is intended to emphasize the existence of prognostic uncertainty in providing survival estimates while also providing a method for caring to those who want to authentically help dying patients. Facing one’s own mortality helps one authentically and compassionately be there for dying patients. The transforming experience of death as essential to one’s self as human being, recognizing that one is living a story with death necessarily a part, promises to overcome the tendency to deny the existential meaning of death for dying patients. This tendency manifests itself through dishonesty about medicine’s limitations in creating prognoses, and specifically survival estimates, as well as in holding only a curative and not palliative goal of treatment. This tendency will be replaced by honest and authentic compassionate actions with those in the process of dying. Representing this change is a focus on the patient as person, living a certain lifestyle, and defining himself by significant events and relationships in the past, present, and future. Death and dying become meaningful through incorporation into the story and style that is the patient. This meaning that is facilitated by caregivers and created by patients is central to achieving a “good death.”
Spiritual pain: A comparison of findings from survivors and hospice patients
Authors: McGrath Pam
Published: May 2006

The article presents comparative research findings on the notion of “spiritual pain.” The findings from interviews with hospice patients affirm the previously published, preliminary conceptualization of spiritual pain from interviews with survivors. However, while the survivor findings highlight the potential for spiritual pain associated with life after high-tech curative treatment, the hospice patient data emphasize the protectiveness of the hospice experience for deflecting the possibility of spiritual pain. It is anticipated the discussion of comparative findings will affirm the importance of researching this “ignored dimension” and, in so doing, will enrich our understanding of the spiritual dimension of healthcare. The work is part of a program presently developing a language of spirituality through research.
Psychosocial issues in palliative care: Physicians’ self-perceived role and collaboration with hospital staff
Authors: Schulman-Green Dena J.
Published: May 2006

Psychosocial issues are a major part of palliative treatment, yet, due to inadequate training, physicians are often ill-prepared to address them. Twenty physicians were interviewed about the importance they placed on psychosocial issues and the perceptions they had of their role in addressing them. Several respondents felt psychosocial issues were important because they affect physical issues, enable holistic care, enhance relationships, impact care decisions, and can reduce patient and family stress. Other respondents did not feel psychosocial issues were their responsibility due to time constraints, their focus on physical care, their lack of expertise in this area, the patients’ preferences for attending physicians, and a sense on the part of house staff physicians of not yet being “real” doctors. Collaboration with other hospital staff helped overcome some of these obstacles. Since physicians must often provide psychosocial care, improved training in addressing psychosocial issues is indicated.
Communication of a cancer diagnosis: Patients’ perceptions of when they were first told they had cancer
Authors: Walsh Declan , Nelson Kristine A.
Published: May 2006

Fifty consecutive cancer patients cared for by a palliative medicine program were interviewed concerning the initial communication of their diagnosis. The majority of patients were satisfied with the manner and the circumstances in which the information was imparted. A minority of women were significantly more unhappy than men about the manner in which they were told.

Sophisticated techniques are available to help physicians impart bad news effectively and humanely.
A longitudinal study of attitudes toward physician-assisted suicide and euthanasia among patients with noncurable malignancy
Authors: Pacheco Jaime , Hershberger Paul J. , Markert Ronald J. , Kumar Geetika
Published: May 2006

This longitudinal study investigated whether attitudes toward physician-assisted suicide (PAS) and euthanasia (E) are stable among patients with noncurable malignancy, and whether depression and various coping strategies were related to such attitudes. Thirty patients with noncurable malignancies completed questionnaires measuring attitudes toward PAS and E, depression, and coping. Three months later, and subsequently at six-month intervals, repeated measures were obtained from 24 patients.

There was a trend for patients to become less supportive of legalizing PAS and E from the initial to last attitude measurement. Depression was unrelated to attitude change. There were significant changes on two coping dimensions: use of social support for emotional reasons and use of religious resources. Our findings should be considered in clinical, legislative, and ethical debates.
The contextual nature of decision making near the end of life: Hospice patients’ perspectives
Authors: Gauthier Donna M. , Swigart Valerie A.
Published: May 2006

Mr. C. was diagnosed with lung cancer seven months ago. The cancer then spread to his brain. He was fully aware that the physicians were treating his symptoms, not the disease; however, discussions regarding the goals of treatment did not occur. He continued the treatment regimen of chemotherapy and radiation therapy. While at home one evening, he fell and fractured his femur. His mobility and independence were at once greatly compromised. While recovering in the hospital, he made the decision to opt out of curative treatment. He stated, “I want to go home, play with my cat, smoke cigarettes, and be with my friends when they can visit.”

What are the processes by which adults with life-threatening conditions make decisions about their care? What is the context of these decisions? The purpose of this study was to describe the process of decision making for adults with a terminal illness.
Music therapy with imminently dying hospice patients and their families: Facilitating release near the time of death
Authors: Krout Robert E.
Published: May 2006

Hospice care seeks to address the diverse needs of terminally ill patients in a number of physical, psychosocial, and spiritual areas. Family members of the patient often are included in the care and services provided by the hospice team, and hospice clinicians face a special challenge when working with families of patients who are imminently dying. When loved ones are anticipating the patient’s impending death, they may find it difficult to express feelings, thoughts, and last wishes. Music therapy is a service modality that can help to facilitate such communication between the family and the patient who is actively dying, while also providing a comforting presence. Music therapy as a way to ease communication and sharing between dying patients and their loved ones is discussed in this article. The ways in which music therapy can facilitate a means of release for both patients and family members in an acute care unit of a large US hospice organization are specifically described. Case descriptions illustrate how music therapy functioned to allow five patients and their families to both come together and let go near the time of death. Elements to consider when providing such services to imminently dying patients and their families are discussed.
A prospective study of the pathophysiology and clinical characteristics of pain in a palliative medicine population
Authors: Gutgsell Terence , Walsh Declan , Zhukovsky Donna S. , Gonzales Francisco , Lagman Ruth
Published: May 2006

Comprehensive pain evaluation is requisite for optimal management. Few studies have evaluated pain syndromes and adequacy of associated analgesic regimens in one population. Available studies in cancer populations have focused on ambulatory patients or hospice-type inpatients. This study was designed to evaluate multiple characteristics of pain and adequacy of therapy in a broad spectrum of patients with advanced cancer presenting to a palliative medicine service. One hundred pain patients (95 with cancer) underwent a comprehensive pain evaluation consisting of history, physical examination, review of available diagnostics, and a pain assessment tool designed for routine clinical use. Seventy-one percent of 141 evaluable patients reported pain in the month before referral. In these 100 patients, 158 distinct sites of pain were reported, with 88 percent reporting a maximum of 2. Pain due to tumor was the most common cause (68 percent), and the most common pathophysiologic mechanism, somatic (52 percent). Pain was almost equally divided between continuous (48 percent) and intermittent (52 percent). Breakthrough pain occurred in 75 percent of continuous pains. Of these, 30 percent were exclusively incidental, 26 percent nonincidental, and 16 percent due to end-of-dose failure. The remainder was of mixed etiology, but almost always with an incidental component. Of intermittent pain syndromes, 61 percent were incidental. On referral, analgesic dosing was inadequate and was compounded by use of regimens that typically did not meet peer-reviewed guidelines. Comprehensive studies rigorously evaluating characteristics of pain and response to treatment are a necessary first step toward more effective treatments for difficult pain syndromes.