Traditional Palliative Care Research Articles

Clinical needs of patients referred early to supportive and palliative care.

9065 Background: Palliative care is evolving from delivering care to patients at the end-of-life to those earlier in the disease trajectory. We evaluated the differences in clinical characteristics, symptoms burdens, and service utilization between traditional palliative care patients (late referrals, LR) and the new patients group who are in earlier in their course of disease (early referrals, ER). Methods: We reviewed consecutive cancer patients referred to the Supportive Care Clinic with follow up visit within 30 days between August 2008 and October 2010. Patients were divided into two groups: ER (defined as patients with expected survival ≥ 2 years or receiving treatment for curative intent) and LR (all others). We compared clinical characteristics, symptoms and service utilization between both groups using chi-square test and Wilcoxon rank sum test. Results: 58% (695/1208) patients had a 2nd visit within 30 days. Among them, 100 patients were classified as ER (14.4%) and 100/595 LR were randomly selected as the comparison group. ER patients were younger (median age 54 years vs 60 years, p=0.009), more likely to have head and neck cancer (67% vs 6%, p<0.001) and to have a shorter interval between cancer diagnosis and palliative care consultation (3.8 m vs 16.2 m, <0.001). ER patients were also more likely to be CAGE positive (15% vs 4%, p=.014), referred from radiation oncology (49% vs 3%, p<0.001), referred for treatment related side effects (70% vs 9%, p<0.001), and receiving active anti-cancer treatment at the time of consultation (74% vs 48%, p=0.0002). Baseline symptoms (Edmonton Symptom Assessment Scale) were similar between ER and LR except for insomnia (1.8 vs 2, p=0.004). LR patients experienced greater improvement in the symptom distress score (-5.5 vs -3, p=0.007). Overall median number of medical visits was 24 for ER vs 10.5 for LR (p<0.001); however, median visit per month was 4.3 for LR and 2.1 for ER (p<0.001). Conclusions: ER was associated with different patient characteristics; patients have similar distress but different needs and outcomes as compared to traditional LR patients.

C.10.02 Late-life depression – do we diagnose and treat correctly?

Because of the rapidly growing older population and increases in longevity, rates of dementia have been rising. Clinical challenges of treating dementia include limited resources and lack of curative therapies. Palliative care approaches improve quality of life and alleviate suffering for dementia patients at the end of life, although implementation may be limited by societal acceptance and feasibility. This review examines the published literature on pain assessments, pain and behavior interventions, tools for advanced care planning, and clinical concerns in dementia patients. Ultimately, modification of the traditional palliative care model may improve outcomes and functioning for dementia patients at all stages of their illness.

Can My Patient Make That Decision? Assessing Capacity to Make Decisions About Clinical Care and Research Participation (516)

palliative care providers working in hospitals, long-term care facilities, community practices, and hospice programs is unwieldy, exhausting to manage, and rapidly expanding. PC-FACS (Palliative Care Fast Article Critical Summaries) is an AAHPM publication designed to help busy clinicians stay on top of current best evidence relevant to contemporary palliative medicine practice, but which, due to the cross-disciplinary nature of palliative care, may not appear in palliative care-specific publications. High-quality articles are selected through careful review of over 60 medical and scientific journals published outside the traditional palliative care literature. In a convenient, electronic, bi-weekly, digest format, concise summaries of the most relevant, newsworthy articles are presented with brief commentary tailored to the evidence needs of the practicing palliative care and hospice clinician. During 2009, PC-FACS reviewed over 130 pertinent articles that might have escaped the notice of many evidence-conscious clinicians. This session will spotlight the PC-FACS best evidence of 2009, and provide insight into emerging clinical research and its incorporation into the current body of palliative care evidence.

Implementing end of life care for patients with renal failure

Traditional palliative care services have focused on individuals with cancer. The NHS National End of Life Care Programme, launched in December 2003, has been working to address this anomaly and to try to enhance end of life care provision for other patient groups. This article reports on work in the area of renal failure at Westmorland General Hospital, Cumbria, where the Preferred Priorities for Care tool has been introduced to support patients nearing the end of life.

Shelter-based palliative care for the homeless terminally ill

Background: The homeless have high rates of mortality, but live in environments not conducive to terminal care. Traditional palliative care hospitals may be reluctant to accept such patients, due to behavior or lifestyle concerns. The Ottawa Inner City Health Project (OICHP) is a pilot study to improve health care delivery to homeless adults. This is a retrospective analysis of a cohort of terminally ill homeless individuals and the effectiveness of shelter-based palliative care. As proof of principle, a cost comparison was performed. Methods: 28 consecutive homeless terminally ill patients were admitted and died at a shelter-based palliative care hospice. Demographics, diagnoses at admission and course were recorded. Burden of illness was assessed by medical and psychiatric diagnoses, addictions, Karnofsky scale and symptom management. An expert panel was convened to identify alternate care locations. Using standard costing scales, direct versus alternate care costs were compared. Results: 28 patients had a mean age 49 years; average length of stay 120 days. Diagnoses: liver disease 43%, HIV/AIDS 25%, malignancy 25% and other 8%. Addiction to drugs or alcohol and mental illness in 82% of patients. Karnofsky performance score mean 409 / 16.8. Pain management with continuous opiates in 71%. The majority reunited with family. Compared to alternate care locations, the hospice projected $1.39 million savings for the patients described. Conclusion: The homeless terminally ill have a heavy burden of disease including physical illness, psychiatric conditions and addictions. Shelter-based palliative care can provide effective end-of-life care to terminally ill homeless individuals at potentially substantial cost savings.

The effects of Reiki on the heart rate of horses

Reiki is an increasingly popular form of complementary therapy. It originated in Japan, and is used to promote relaxation and healing (Rand, 2000). Reiki is a vibrational therapy that is claimed by practioners to be a method of channelling universal life energy (Mansour et al., 1999). This energy is then claimed to balance the biofield and initiate the body's own healing processes (Miles & True, 2003). The therapy involves the flow and transfer of energy, from the practitioner, to the patient. Often described as the “laying on of hands” (Rand, 2000), patients report feelings of warmth, deep relaxation, sleepiness, happiness, increased spiritual awareness, (Rand, 2000) and improved pain control (Olson et al., 2003).Reiki has become popular as an adjunct to conventional medicine (Miles & True, 2003; Olson & Hanson, 1997), and is increasingly being used alongside traditional palliative care for people with serious illnesses (Miles & True, 2003; Wardell & Engebretson, 2001; Neild-Anderson & Ameling, 2000; Mansour et al., 1999; Bullock, 1997; Olson & Hanson, 1997).

Estimating the size of a potential palliative care population

To develop a method for estimating the population who could potentially benefit from receiving palliative care in the last year of their lives, and then apply the estimates to the Western Australian population to ascertain characteristics of these people. Three estimates of the potential palliative care population, Minimal, Mid-range and Maximal, were developed through focus groups, interviews and the literature. These estimates were applied to the cohort of people who died in Western Australia between 1 July 2000 and 31 December 2002 by linking death records with hospital morbidity data through the Western Australian Data Linkage System. Between 0.28% and 0.50% of people in the Western Australian population in any one year could potentially benefit from palliative care, many of whom die from conditions other than neoplasms. While neoplasms accounted for 59.5% of all underlying causes of deaths in the Minimal Estimate, heart failure (21.0%), renal failure (9.8%), chronic obstructive pulmonary disease (9.6%), Alzheimer's disease (4.0%), liver failure (3.2%), Parkinson's disease (1.3%), motor neurone disease (0.9%), HIV/AIDS (<0.01%) and Huntington's disease (<0.01%) accounted for other conditions in this estimate. The study was expanded to include Mid-range and Maximal Estimates. Characteristics of the Western Australian population in these three estimates are described. Unlike traditional palliative care estimates that focus on malignant disease, this study included nonmalignant conditions in a set of three estimates of a potential palliative care population. By using population-based data to describe characteristics of people who compose palliative care populations, these results offer a tool for planning equitable healthcare services.

The e-Hospice—Beyond traditional boundaries of palliative care

The term palliative care refers to the care for patients with terminal conditions. Traditionally, much of this end-of-life care has been provided by hospices or acute care centres. As healthcare systems face aging patient demographics and struggle with the need to deliver quality services with fewer resources, we must find new approaches to healthcare delivery. Some of the more established areas of healthcare such as cardiac care or administration are rather advanced in terms of the application of information technologies such as clinical knowledge bases and computer-integrated service delivery models. In palliative care, partly due to its relatively recent emergence as a discipline, informatics has played only a minor role to date. In this paper, we argue that we can achieve cost reduction and increased quality of service by adopting network-enabled information systems (IS) and telematics to advance the boundaries of traditional palliative care towards the patient homes. This vision, called e-Hospice in this article, is not meant to replace but to augment the traditional brick and mortar hospices. We discuss our model of an e-Hospice along with the challenges and opportunities involved in realising it. Our experiences are based on our ongoing tight collaboration with a local hospice as well as our studies of prototype technology infrastructures we have developed in our laboratories. We present a concrete application scenario in this paper, along with a description of the underlying architecture and technologies that underlie the infrastructures developed.

When a child cannot be cured - reflections of health professionals

This article reports on a study exploring the challenges and complexities of caring for a child with cancer no longer responding to curative therapy. The difficulties that health professionals face when initiating and providing palliative care to children with cancer is largely unexplored. A greater understanding of these challenges is needed to inform the development of effective models of care. Participatory group discussions and in-depth interviews were used to explore how health professionals from three disciplines - nursing, medicine and social work - view their role during the shift from cure to palliation. Interviews were tape-recorded and transcribed verbatim. Content and thematic analysis was used to identify themes and important messages in the transcripts. This study illustrates how the trajectory of childhood cancer is characterized by uncertainty, especially following relapse where there is reduced clarity surrounding the child's outcome. Prognostic uncertainty and continued hope for survival make the shift to palliation difficult, raising questions about the applicability of traditional palliative care models for these children and their families. Decision making in this context is complicated by a lack of clarity, uncertainty and continued hope. Shifting the focus of care from cure to palliation is not experienced as a discrete event but rather, as an awareness and acceptance that slowly develops. New models of care that incorporate palliative care throughout the disease trajectory are recommended.

Needs of the dying in nursing homes.

To describe the palliative care needs of dying nursing home residents during the last 3 months of life. Nurses, aides, and family members completed structured interviews after all deaths of residents in two nursing homes during a 1-year study period. For each resident who died, family and staff caregivers answered parallel questions on the presence of physical and emotional symptoms, unmet needs for treatment of these symptoms, and the quality of the dying experience. Of 259 eligible respondents 176 completed interviews (68%). Decedents' average age was 82, and 90% died in the nursing home rather than in a hospital. Most deaths were preceded by orders to withhold resuscitation (79%) and other treatments (39%). The most common physical symptoms were pain (86%), problems with personal cleanliness (81%), dyspnea (75%), incontinence (59%), and fatigue (52%). Depressed mood (44%), anxiety (31%), and loneliness (21%) were common emotional symptoms. Respondents believed residents needed more treatment than they received for emotional symptoms (30%), personal cleanliness (23%) and pain (19%). Fifty-eight percent of respondents believed the resident experienced a "good death," as they would have wanted it to be. Dying nursing home residents need improved emotional and spiritual care, help with personal cleanliness, and treatment for pain. Efforts to improve end-of-life care in nursing homes should combine traditional palliative care services with increased attention to emotional symptoms and personal care services.

A hospital-based comfort care team: consultation for seriously ill and dying patients.

Access to hospice and palliative care services has been limited primarily to patients in the final stages of malignant terminal illness. Many have recognized the need to expand the scope of care to include other needy populations. This article describes the clinical activities of the Oregon Health Sciences University (OHSU) Comfort Care Team. This physician directed inter-disciplinary team provides consultation for any seriously ill patient with comfort care needs. There is no requirement that patients be in the final stages of a terminal illness, nor that they forego curative or life-prolonging treatments. The initial experience of this team supports the usefulness of a broader focus of care. The majority of patients referred for consultation would not have been served under a traditional palliative care model.