Hospice Experience Research Articles

Average length of stay in hospice for five types of cancer

17038 Background: Factors which influence average length of stay (ALOS) for cancer patients who choose hospice include patient and family preferences, availability of hospice services, demographics, specialty and experience of referring physician, advances in treatment options, and type of cancer. In this paper, we examine trends in ALOS for the top five cancers in patients who utilized a large, national hospice provider between 2000 and 2006. Methods: We examined 61,457 patients with prostate, colorectal, breast, lung, or pancreatic cancer who were admitted to one of 40 hospice programs and died on service between 1/1/2000 and 11/30/2006. The top five cancers accounted for 58% of all cancer deaths in the Vitas programs. The effect of Type of Cancer and Year on ALOS was evaluated using analysis of variance. Pair-wise differences were compared using the Bonferroni correction. Results: Overall ALOS was 40.6 days. ALOS for prostate, colorectal, breast, lung and pancreas was 47.9, 45.6, 45.5, 37.8 and 31.7 days, respectively. Prostate, colorectal and breast ALOS were not significantly different from one other; lung ALOS was significantly less than the top three (p < .001); and pancreas ALOS was significantly lower than all others (p < .001). There was no evidence of yearly trends in ALOS for different cancers during the study period. Conclusions: ALOS for patients with one of the five leading cancers who elected hospice services prior to death has remained remarkably stable over the last seven years. This stability, combined with an overall ALOS of less than six weeks, suggests that much still needs to be done to maximize cancer patient utilization of hospice services. The somewhat longer ALOS for patients with prostate, colorectal and breast cancer may be related to differences in natural history and effectiveness of anti-neoplastic therapies when compared to cancers of the lung and pancreas. No significant financial relationships to disclose.

Treatment with midazolam for nocturnal sedation of terminal cancer patients in a hospice setting

Sleep disturbance often leads to physical and psychological distress and contributes to poor quality of life in terminal cancer patients. Midazolam is administered by continuous intravenous infusion in many Japanese palliative care units for the purpose of nocturnal sedation when patients cannot take oral medications or do not sufficiently respond to oral or per-rectal medication. However, there is insufficient data to assess optimal doses and other parameters for administration. In addition, the possibility of tolerance to midazolam reported in several studies is a further limitation. The present study retrospectively surveyed inpatient hospice experience in 19 patients who were prescribed midazolam in an attempt to induce nocturnal sedation. The midazolam infusion rate used for the longest period each day to maintain appropriate sleep without oversadation and with clear arousal on the following morning was defined as the dose. Midazolam maintenance doses of 2 patients were greatly increased during their treatment period. Statistical analysis was then conducted in the other 17 patients using NONMEM software to analyze time-dependent changes in maintenance doses and possible associated factors. However, in the other 17 patients no significant time-dependent changes were observed during midazolam treatment. It would suggest that torerance may not be induced by intermittent administration of midazolam. Midazolam maintenance doses were significantly greater in patients treated with haloperidol.

Dying well: nurses’ experiences of ‘good and bad’ deaths in hospital

This paper reports a study investigating hospital nurses' experiences of death and dying. Despite advances in medical science and health care, together with the push towards individualizing approaches to patient care in the developed world, significant variation in the care of dying patients still exists. The international issues relating to differing types of death reveal both its complexity and diversity, with evidence of 'good death' experiences largely focused on hospice experiences, and a lack of research on death in general hospitals. In-depth interviews were conducted in 1999 with a convenience sample of 29 Registered Nurses in the United Kingdom based on their hospital death experiences. Semiotic analysis was used to identify the 'deep structures' that underlie and form part of cultural communication as a way of understanding how nurses made sense of death. Data interpretation was enhanced through the use of a typology of 'good and bad deaths'. The findings suggest that different experiences of death are based on the extent to which nurses were able to exert control over the dying process. The management of death in hospital is a major source of conflict for nurses. Good and bad death experiences were constructed according to their impact on the sentimental order of the ward, the intangible, but real patterns of mood that influenced nurses' feelings. Moreover, good and bad deaths focused less on patients' needs and the dying process and more on the death event and nurses' abilities to manage organizational demands. There is a need to improve communication with patients and families about diagnosis and prognosis to ensure that effective communication takes place and 'blocking behaviour' is avoided. The findings also challenge practitioners to focus attention on death as a process, and to prioritize patients' needs above those of the organization. Moreover, there is the need for guidelines to be developed enabling patients to have a role in shaping events at the end of their lives.

Evaluating Transformational Leadership Skills of Hospice Executives

Health care is a rapidly changing environment requiring a high level of leadership skills by executive level personnel. The hospice industry is experiencing the same rapid changes; however, the changes have been experienced over the brief span of 25 years. Highly skilled hospice executives are a necessity for the growth and long-term survival of hospice care. This descriptive study was conducted to evaluate the leadership skills of hospice executives. The study population consisted of hospice executives who were members of the state hospice organization in Ohio and/or licensed by the state (88 hospice providers). Three questionnaires were utilized for collecting data. These questionnaires collected data on transformational leadership skills of participants, participants' personal demographics, and their employer's organizational demographics. Forty-seven hospice executives responded (53%). Key findings reported were high levels of transformational leadership skills (mean, 3.39), increased use of laissez-faire skills with years of hospice experience (P = .57), and positive reward being a frequent leadership technique utilized (mean, 3.29). In addition, this was the first study of leadership skills of hospice executives and the first formal collection of personal demographic data about hospice executives.

How do surrogate decision makers describe hospice? Does it matter?

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Of the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.

Survey on the contributions of hospice and palliative care staff to spiritual and life-and-death education at school

We surveyed the involvement of hospice and palliative care staff in spiritual and life-and-death education at school. We sent a questionnaire to a total of 138 hospice and palliative care institutions, receiving 67 responses (response rate 49%). A variety of staff at 15 institutions (22%) practiced life-and-death education. Most often, they realized the necessity of such education when they observed children grieving from the death or dying of a family member. 6 institutions targeted their life-and-death education to primary schools, 8 to junior high schools, and 6 to senior high schools. The number of teaching sessions ranged from once to 97 times per year, with hours of class contact less than one hour in 2 institutions, and 1-3 hours in the other 12 institutions. Even those institutions not conducting school education almost all responded that school education on life and death by healthcare workers would be meaningful. Respondents concurred that children would be moved by both "life-and-death education" and "spiritual education." Further comments almost all noted the importance of life-and-death education, not only for children but also for adults. In this sense, the expertise and experiences of hospice and palliative care institutions will become valuable educational resources.

Holistic Home Hospice: Caring for a Dying Father—A Family Hermeneutic Exemplar

This exemplar focuses on the patient and the family. The challenges of caring for a dying parent are numerous, but having the resourcefulness of home hospice may assist in such a struggle. The home hospice experience involves providing care while attending to the sensitivity needs of culture, religion, and emotions. Many share a lack of knowledge regarding available in-home services such as home hospice, which allows one the independent opportunity to die with dignity in the comfort of one’s own environment with a sense of peace, familiarity, and familial love. While the family cared for their dying father, little did they know that actual caring would require a holistic approach and that an out-of-home agency was available to guide them through what would become an unfortunate experience, yet a successful one.

As-Needed Morphine: Yes, but at What Dose and at What Interval?

In response to a clinical case of a patient with severe pain requiring large doses of morphine, a question arose about the appropriate dose and schedule of as-needed (PRN) rescue morphine. After receiving varied local opinions, this question was investigated further by providing the following case scenario to several clinicians recognized for their expertise in pain management. Mrs Smith is an elderly woman with advanced, incurable cancer. She has recently been requiring large doses of morphine to control her pain. Her oral morphine dose for the last 2 weeks has been 1,000 mg of sustainedrelease morphine every 8 hours (a total of 3,000 mg/d). She has not had any undue toxicity from this dose. She is awake and alert and her constipation is controlled with appropriate laxatives. During the previous 2 weeks, she has developed exacerbated pain with an average daily pain score of 8 of 10. It is decided to admit her to the hospital and give her parenteral morphine to improve her pain control. For this exercise, assume that an appropriate evaluation was done, and no treatment other than narcotics is deemed necessary. After admitting her to the hospital, the attending physician calculates that she ought to have a 50% increase in her morphine equivalent dose. This equates to 4,500 mg/d of oral morphine. It is decided to translate this into an intravenous dose by dividing this by one third. This is calculated to be 1,500 mg/d of intravenous morphine. It is opted to administer this as a continuous intravenous morphine infusion of 60 mg/h. Because the physician is working with an experienced group of oncology nurses with hospice experience, and the physician plans to leave the hospital grounds (and will be available by pager for questions and emergencies, of course), she decides to order a PRN morphine dose for uncontrolled and/or breakthrough pain. She asks you for advice. The following two questions were asked of the experts: (1) What is the most appropriate intravenous bolus morphine PRN dose that should be given to this patient in the event that she still has severe pain (with a pain score of 7 to 8 of 10)? ___ mg. (2) At which intervals can this PRN morphine dose appropriately be repeated, assuming that the patient still has uncontrolled pain? ___ 10 minutes, ___ 15 minutes, ___ 30 minutes, ___ 60 minutes, ___ or other, please describe _____________________. The expert clinicians listed in Table 1 replied; their responses are listed in Table 2 Given the above-illustrated opinion conflicts, with a 10-fold variation in dose and a six-fold variation in timing interval, a search through published sources was conducted, mirroring a wide range of combinations regarding recommendations for both the PRN narcotic doses and the appropriate intervals at which they should be repeated in the event of continued pain. Data from 22 review articles and texts that review guidelines for the treatment of cancer pain, presented in Table 3, provided a 20-fold variation in recommended narcotic doses (1% to 20% of daily doses) along with scattered opinions, or no direction, regarding appropriate dose intervals for potential repeat doses. From the Department of Medicine and Department of Oncology, Mayo Clinic, Rochester, MN.

Use of Focus Groups and Reflective Journaling in a Hospice Experience

Use of Focus Groups and Reflective Journaling in a Hospice Experience

Another form to fill in! Clients’ reflections on the hospice use of questionnaires

The use of validated tools is increasingly accepted as an unqualified good that is viewed as best practice in supportive care. This article begins to explore the impact of standardized questionnaire use in supportive care by presenting findings from recent qualitative research on clients' perceptions of the use of standardized assessment tools during their hospice experience. There were two arms to this phenomenological descriptive study: A. Interviews with hospice patients and their carers; B. Interviews with hospice staff. The results from arm A are reported in this article. This involved interviews with ten families (available patient and carer) who had hospice experience with questionnaires and ten families who were cared for without questionnaires. The interviews were audiorecorded, transcribed verbatim, and thematically analysed. The research presented in this article is seminal work in the area which affirms significant concerns about the use of questionnaires in hospice practice. The evidence indicates the majority of clients dislike the use of questionnaires and points to questionnaire use being a practice built around staff, rather than client, needs. The findings also provide insight into the process of collusion by which hospice workers who are enthusiastic about the use of questionnaires can be led to believe, because of client gratitude, that the process is positive. Questionnaires should not be seen as an unqualified good, and thus should not be automatically accepted as best practice within hospice or palliative care service provision.

The Home Health Care Team: What Can We Learn From the Hospice Experience?

This article briefly describes the history of the development of hospice and home health care and compares and contrasts the policies that govern these two health care delivery systems. The article articulates how these policies affect the nature of interprofessional collaboration within each milieu. The author makes suggestions for what home health care can glean from hospice care to improve service delivery.

Transformative Aspects of Caregiving at Life's End

We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life's end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life's end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience.

University of South Carolina School of Medicine.

University of South Carolina School of Medicine.

Ambulatory hospice training in family medicine residency.

End-of-life care has become an important competency for primary care physicians, and yet many family physicians feel unprepared in the areas of hospice and/or palliative medicine. In preparation for designing an ambulatory geriatrics rotation within a family medicine residency training program, a needs assessment revealed gaps in hospice training specific to the philosophy of hospice and the common settings in which it is practiced. A hospice-focused core curriculum unit was developed, using a community-based hospice experience and formal seminars. The resident's community-based experiences included home visits and nursing home contacts as part of a multispecialty hospice team. End-of-rotation resident assessments and rotations evaluations revealed enhanced resident understanding of hospice philosophy and venues, increased knowledge of the criteria for hospice admission and medical management of the dying patient and an increased intention to refer patients to a hospice program, although follow-up audits of referral patterns were inconclusive to date.

Accepting hospice care: Issues for the African American community

Historically, African Americans have not been well represented in hospice care. African Americans make up approximately 12 percent of the general population, but according to the National Hospice and Palliative Care Organization, in the year 2002, African Americans constituted only 8 percent of the more than 600,000 Americans who died while receiving hospice care. As diversity increases in the United States, cultural misunderstandings and differences emerge around end‐of‐life care. This paper will focus on African Americans’ underuse of hospice services. First, the author considers the increased need for communication and cross‐cultural understanding. Second, the author discusses African American challenges and concerns that may result from cultural differences, values, spirituality, beliefs, and trust. Third, the hospice experiences of two African American families are presented. Finally, the author raises the question: What is needed to support and assist the African American community in utilizing hospice interventions?

Medical student reflects on hospice experience.

Mrs. Smith, an 84-year-old woman, was admitted to Hospice of the Bluegrass, Lexington, Ky, after she had an emergency appendectomy that was complicated by fecal peritonitis. She originally visited a local emergency department with complaints of nausea, vomiting, and diffuse abdominal pain. The

Spiritual pain: a comparison of findings from survivors and hospice patients.

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.

Hospice experience and perceptions in nursing homes.

The purpose of this study was to describe the experiences and perceptions of hospice nurses caring for residents in long-term care facilities. The study used a fax-back survey to gather data from 69 hospice nursing and nurse managers in 24 hospices across one Midwestern state. Respondents reported negative experiences with pain management and care coordination in the nursing home setting. Although hospice is thought to be a benefit to residents, hospice staff report frustration in caring for nursing home patients, especially in trying to control pain. The study identifies opportunities for improvement in hospice and nursing home staff relationships.

Experience with hospice: reflections from third-year medical students.

Nationally, there is a growing emphasis on experiential education and an interest in palliative care for health professionals. Hospice visits were added to the family medicine community rotation for third-year medical students to provide them with first-hand exposure to the hospice experience. Seven significant themes emerged from the students' reflection papers: (1) the value of hospice and the supportive role of the hospice team, (2) the value of empathy, (3) the distinction between acceptance and resignation, (4) the changing face of hope, (5) an understanding of death as a natural event, (6) the quality of family caregiving, and (7) the role of the physician in caring for the dying. The implications for medical education discussed include the value of home visits as a setting for experiences in palliative care and the effectiveness of narrative assignments for encouraging student reflection.

The Web-based worksheet: an opportunity for prompt, consistent, and expert feedback in a community-based hospice experience.

We faced a challenge in providing a consistent high-quality learning experience in hospice care, especially because our community-based medical school has students rotating in hospices in six separated communities and the number of faculty with expertise in palliative care is limited. To address these concerns, a Web-based worksheet with interaction with a central campus faculty member was designed for use in a hospice module in a family practice clerkship.