Hospice living

The changing nature of hospice care is making it a more acceptable alternative for patients with late-stage AIDS. In the past, hospice was seen as a place people went to die, but that image is changing. Hospice is beginning to be seen as a support network for people who may or may not be treating their disease aggressively, and who need some assistance in maintaining an acceptable quality of life. Medicare requires that patients have a diagnosis of six months or less to live to enter a hospice program, but that kind of time restriction is difficult and unpredictable with AIDS patients. Patients and advocates praise hospice care because it gives the patient control over pain, lets them specify which treatments to withhold, and alleviates the pain associated with end-stage diseases. One patient's experiences with hospice care are detailed, and a list of readings and organizations is included.     

Palliative care for elderly patients with advanced cancer: a long-term intervention for end-of-life care

OBJECTIVE: This essay identifies elderly cancer patients as a population that experiences cancer-related health disparities at the end-of-life. METHODS: While hospice and palliative care (PC) are care options for this population, it is argued that PC prior to hospice will yield numerous benefits for long-term end-of-life care. RESULTS: It is theorized that PC prior to hospice will be beneficial in meeting the family's needs in a timely and adequate manner, improving quality of life, increasing caregiver satisfaction and communication, possibly delay institutionalization of the patient, and may ultimately impact bereavement. CONCLUSION: Patients would be able to benefit from PC in an early stage of their disease, positively influencing older cancer patients and families. PRACTICE IMPLICATIONS: Long-term assessment of the impact of PC prior to hospice is proposed as a promising direction of future research.     

A critical realist evaluation of a music therapy intervention in palliative care

Background

Music therapy is increasingly used as an adjunct therapy to support symptom management in palliative care. However, studies to date have paid little attention to the processes that lead to changes in patient outcomes. To fill this gap, we examined the processes and experiences involved in the introduction of music therapy as an adjunct complementary therapy to palliative care in a hospice setting in the United Kingdom (UK).

Methods

Using a realistic evaluation approach, we conducted a qualitative study using a variety of approaches. These consisted of open text answers from patients (n?=?16) on how music therapy helped meet their needs within one hospice in Northern Ireland, UK. We also conducted three focus groups with a range of palliative care practitioners (seven physicians, seven nursing staff, two social workers and three allied health professionals) to help understand their perspectives on music therapy’s impact on their work setting, and what influences its successful implementation. This was supplemented with an interview with the music therapist delivering the intervention.

Results

Music therapy contains multiple mechanisms that can provide physical, psychological, emotional, expressive, existential and social support. There is also evidence that the hospice context, animated by a holistic approach to healthcare, is an important facilitator of the effects of music therapy. Examination of patients’ responses helped identify specific benefits for different types of patients.

Conclusions

There is a synergy between the therapeutic aims of music therapy and those of palliative care, which appealed to a significant proportion of participants, who perceived it as effective.

     

Is There a Color Line in Death?: An Examination of End-of-Life Care in the African American Community

Although the goals of end-of-life care and hospice are to mitigate suffering and improve quality of life for patients with terminal illnesses, they remain underutilized by a significant number of African Americans. While sociocultural issues play a role in the underutilization of these resources among African Americans, other confounding factors affect the ability of African Americans to adequately access quality care at the end of life. Here, the authors examine the various barriers preventing increased use of hospice care and palliative therapy among African Americans. A particular focus of this examination will revolve around suggestions for increasing the use of end-of-life care among African Americans in the future.     

Attitudes and Knowledge of Iranian Nurses about Hospice Care

Context:

Due to expansion of chronic diseases and increase of health care costs, there is a need for planning and delivering hospice care for patients in their final stages of life in Iran. The aim of the present study is to investigate the knowledge and attitudes of nurses about delivering hospice care for End of Life (EOL) patients.

Materials and Methods:

This cross-sectional study was conducted in 2012 with a sample size of 200 nurses that were selected by convenient (available) sampling. The data collection instrument was a self-administered questionnaire whose validity was approved by experts’ opinions and its reliability was approved by test-retest method.

Results:

Among all participants of this study, 87% were female. The mean age of nurses was 32.00 ± 6.72. From all respondents 62% stated that they have no knowledge about hospice care and 80% declared that need for hospice care is increasing. Most of the participants felt that, appropriate services are not presented to patients in the final stages of their lives. About 80% believed that hospice care leads to reduction of health care costs, improvement of physical, mental and social health of patients and finally improvement of the quality of health care services. There was a significant relationship between age, employment history and level of education of nurses and their attitude and knowledge about how this service is provided.

Conclusion:

In view of the increase in chronic illnesses and the costs of caring, the need for provision of hospice care is felt more and more every day. However the awareness level of nurses about these services is low. Therefore the need for including these issues in nursing curriculum and holding scientific courses and seminars in this field is needed.     

Physical therapy in palliative care: from symptom control to quality of life: a critical review

Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients' suffering. Physiotherapy treatment methods like therapeutic exercise, electrical modalities, thermal modalities, actinotherapy, mechanical modalities, manual physical therapy and assistive devices are useful for a range of life-threatening and life-limiting conditions like cancer and cancer-associated conditions; HIV; neurodegenerative disorders like amyotrophic lateral sclerosis, multiple sclerosis; respiratory disorders like idiopathic pulmonary fibrosis; and altered mental states. The professional armamentarium is still expanding with inclusion of other miscellaneous techniques which were also proven to be effective in improving quality of life in these patients. Considering the scope of physiotherapy in India, and in palliative care, professionals in a multidisciplinary palliative care team need to understand and mutually involve toward policy changes to successfully implement physical therapeutic palliative care delivery.     

Ethical considerations for ventricular assist device support: a 10-point model

The potential for long-term support on a ventricular assist device (VAD) in the bridge-to-transplant (BTT) and destination therapy (DT) settings has created unprecedented ethical challenges for patients and caregivers. Concerns include the patient's adaptation to life on a device and the ethical, clinical, and practical issues associated with living on mechanical support. On the basis of our experience treating 175 consecutive VAD patients, we have developed a model to address the ethical and psychosocial needs of patients undergoing VAD implantation. Patient preparation for VAD implantation encompasses three phases: 1) initial information regarding the physical events involved in implantation, risks and benefits of current device technology, and the use of VAD as a rescue device; 2) preimplant preparation including completion of advance directives specific to BTT/DT, competency determination, and identifying a patient spokesperson, multidisciplinary consultants, and cultural preferences regarding device withdrawal; and 3) VAD-specific end-of-life issues including plans for device replacement and palliative care with hospice or device withdrawal. This three-phase 10-point model addresses the ethical and psychosocial issues that should be discussed with patients undergoing VAD support.     

The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review

ObjectiveThe purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions?MethodsThe study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines. Researchers systematically searched five databases for experimental and observational studies on the evidence supporting video education for hospice and palliative care patients and caregivers, published in 1969–2019.ResultsThe review identified 31 relevant articles with moderate-high quality of evidence. Most studies were experimental (74 %), came from the United States (84 %) and had a mean sample size of 139 participants. Studies showed that video interventions positively affect preferences of care and advance care planning, provide emotional support, and serve as decision and information aids.ConclusionA strong body of evidence has emerged for video education interventions in hospice and palliative care. Additional research assessing video interventions’ impact on clinical outcomes is needed.Practice implicationsVideos are a promising tool for patient and family education in hospice and palliative care.     

Transitioning out of prognostic talk in discussions with families of hospice patients at the end of life: A conversation analytic study

ObjectiveTo examine transitions out of prognostic talk in interactions between clinicians and the relatives and friends of imminently dying hospice patients.MethodsConversation analysis of 20 conversations between specialist palliative care clinicians and the families of imminently dying patients in a hospice.ResultsFollowing the provision and acknowledgement of a prognostic estimate, clinicians were able to transition gradually towards making assurances about actions that could be taken to ensure patient comfort. When families raised concerns or questions, this transition sequence was extended. Clinicians addressed these questions or concerns and then pivoted to action-oriented talk, most often relating to patient comfort.ConclusionIn conversations at the end of life, families and clinicians used practices to transition from the uncertainty of prognosis to more certain, controllable topics including comfort care.Practice ImplicationsIn a context in which there is a great deal of uncertainty, transitioning towards talk on comfort care can emphasise action and the continued care of the patient and their family.     

Palliative care as a response to dysthanasia

Palliative care is frequently discussed as an alternative or a counter-balance to euthanasia. In this paper, palliative care is considered as a response to dysthanasia or therapeutic persistence. First, the main features of dysthanasia are mentioned: the accent is put on different questions: until when to implement therapeutic persistence? When does the treatment become useless? What is a permanent vegetative condition? Then, palliative care, the scope of which is to achieve the best life quality for the patient and his family is discussed. The hospice and its care are emphasized, analyzing the international guidelines on the topics at the end of life. International palliative care recommendations are analyzed; special attention is paid on the codex of medical ethics and deontology and its regulations concerning palliative care. Conclusion summarizes some thoughts about dysthanasia and palliative care.     

Different needs for different care

Patients with advanced AIDS may need one of three types of home care: hospice, attendant care, or skilled nursing/infusion care. Many in the HIV community have dismissed hospice care as an indication that the patient no longer wants aggressive treatment, but hospice is becoming more flexible to patients' needs. Attendant care provides housekeeping services and respite for caregivers. Infusion (IV) therapy permits patients to receive intravenous treatment outside a hospital setting. Patients should expect an adjustment period when turning to home health services, and should take an active role in seeking out benefits and clarifying health care insurance coverage.     

Impact of Specialist Home-Based Palliative Care Services in a Tertiary Oncology Set Up: A Prospective Non-Randomized Observational Study

Background:

Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission.

Materials and Methods:

Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters.

Results:

Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes.

Conclusion:

Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.     

A randomised controlled pilot and feasibility study of music therapy for improving the quality of life of hospice inpatients

Background

Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias.

Methods

This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12?months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only.

Results

Fifty one participants were recruited over 12?months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants.

Conclusions

A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible.

Trial registration

ClinicalTrials.gov: NCT02791048. Registered 6 June 2016.

     

Dental Expression and Role in Palliative Treatment

World Health Organization defines palliative care as the active total care of patients whose disease is not responding to curative treatment. Palliative care for the terminally ill is based on a multidimensional approach to provide whole-person comfort care while maintaining optimal function; dental care plays an important role in this multidisciplinary approach. The aim of the present study is to review significance of dentist''s role to determine whether mouth care was effectively assessed and implemented in the palliative care setting. The oral problems experienced by the hospice head and neck patient clearly affect the quality of his or her remaining life. Dentist plays an essential role in palliative care by the maintenance of oral hygiene; dental examination may identify and cure opportunistic infections and dental disease like caries, periodontal disease, oral mucosal problems or prosthetic requirement. Oral care may reduce not only the microbial load of the mouth but the risk for pain and oral infection as well. This multidisciplinary approach to palliative care, including a dentist, may reduce the oral debilities that influence the patient''s ability to speak, eat or swallow. This review highlighted that without effective assessment of the mouth, the appropriate implementation of care will not be delivered. Palliative dental care has been fundamental in management of patients with active, progressive, far-advanced disease in which the oral cavity has been compromised either by the disease directly or by its treatment; the focus of care is quality of life.     

Creating self-care units in the acute care setting: a case study

Creating an environment in which patient's responsibility for self is fostered and nurses can practice professional and autonomous nursing practice is a challenge in today's hospitals. Innovative systems and structures need to be developed to assure quality of patient care and a high quality work environment. Newark Beth Israel Medical Center responded to the many demands of the mid-1980s, including increasing acuity of patients hospitalized, personnel shortages in nursing, physical therapy and other disciplines, and diminishing dollars available to the health care institution, through the creation of Self-Care Units. This article reviews how they came about, the way in which Self-Care Units function within the acute care setting and the management philosophy and structure which make them work. The experience at Newark Beth Israel Medical Center demonstrates that the potential exists to put control back at the bedside with the patient and the health care team working with the patient to achieve mutual goals. The focus of care has shifted from a "doing for" to a "working with" patients to identify interventions which promote active participation in hospitalization and a sense of self responsibility.     

An innovative, longitudinal program to teach residents about end-of-life care.

At the University of California, Irvine Medical Center, an end-of-life curriculum was implemented in 2000 for an internal medicine residency utilizing a longitudinal approach that allowed residents to follow patients through their entire hospice experience. An elective home hospice rotation was developed for which third-year residents served as primary care physicians for patients at the end of life over a one-year period. Residents were supervised by faculty who were hospice medical directors. They also learned through case vignettes, quarterly meetings, textbook reading, and personal projects. From July 2000 to June 2002, residents demonstrated positive attitudes towards hospice care and recommended the rotation highly (mean 8.86 on a scale of 1-10). The rotation grew in popularity from six initial residents to ten residents the next year, and has since become a mandatory rotation for all senior residents. A 360-degree evaluation uniformly indicated positive resident performance from the hospice team (mean scores 7.56-8.69 on a 1-9 scale), family (mean scores 9.3-9.7 on a 1-10 scale) and faculty (mean scores 7.29-7.72 on a 1-9 scale). Residents were also pleased with the level of teaching (mean 8.86 on a scale of 1-10) and felt that the patient care load was "just right." Their knowledge improved by 8% (p =.0175). In conclusion, a longitudinal hospice rotation was implemented that fulfilled curricular goals without undue burden on the residents or residency program.     

人文护理对临终病人生活质量的影响研究

目的本文从实证的角度出发,探讨在临终关怀的临床应用中,人文关怀模式与传统护理模式相比对提高病人生活质量所起的重要作用。方法将临终病人随机分为实验组和对照组,各31例。对照组在临终关怀病房接受常规护理;实验组在临终关怀病房接受按照“人文护理模式”进行的护理。并施以生活质量核心量表、痰病治疗功能评估调查问卷调查,对结果进行分析。结果①实验前两组病人的生活质量的各分量表评分和总分均无明显差异;②实验后两组病人的生活质量评分差异性显著。结论人文护理模式对临终病人生活质量的改善有很大的意义,较之常规护理模式,能够较大程度地提高临终病人的生活质量。     

Effects of metabolic control, patient education and initiation of insulin therapy on the quality of life of patients with type 2 diabetes mellitus

OBJECTIVE: The objective of this study was to evaluate the impact of initiation of insulin therapy, metabolic control and structured patient education on the diabetes-related quality of life (QoL) in insulin-treated patients with type 2 diabetes mellitus. METHODS: This prospective study was conducted with 71 consecutively recruited patients with insulin-treated diabetes at the University hospital. All patients participated an inpatient diabetes treatment and teaching program (DTTP) for conventional insulin therapy (mean age 68.9 years, HbA1c 10.1+/-1.4%, diabetes duration 11.2 years (range: 0-25.5 years), body-mass-index 28.7+/-5.7kg/m(2). Diabetes-related quality of life was assessed before and 6 months after participation in the DTTP using the standardized questionnaire of Lohr analysing the subscales: social relations, physical complaints, worries about the future, dietary restrictions, fear of hypoglycaemia, and daily struggles. RESULTS: Only patients switched on insulin therapy showed significant improvement in diabetes-related quality of life 6 months after participation in the DTTP (p=0.03), fewer physical complaints (p=0.03), fewer worries about the future (p=0.02), fewer daily struggles (p=0.01) and less fear of hypoglycaemia (p<0.001), while patients, who were already on insulin therapy showed no improvements in diabetes-related quality of life. Though, residual analysis reveals that effects on patients' QoL are mainly caused by improvements in metabolic control. CONCLUSIONS: Improvements in metabolic control have a significant effect on different diabetes-related quality of life domains in patients with diabetes mellitus. PRACTICE IMPLICATIONS: Appropriate interventions resulting in better metabolic control, such as starting on insulin therapy within a structured patient education program seem to be an effective approach to improve patients' diabetes-related quality of life.     

A diabetes care team--role of diabetes specialists and certified diabetes educator]

In recent decades, diabetes care has undergone fundamental changes that have influenced the manner in which any type of diabetic patients are managed: (i) acceptance of tight metabolic control; (ii) recognition of primary care management; (iii) focus on quality improvement: and (iv) emphasis on cost containment. Then, the role of a diabetes care team has been recognized and acted upon to a far greater extent than before. Treatment of diabetes consists of two principal components: metabolic control and intervention to prevent complications. The former is a part of the primary health care scheme in which the indication for education, as well as care and treatment, frequently depend of the data produced by patients; the latter pertaining to hospital-based care. In 2001 in Japan, the number of the diabetes specialists is about 2500, and the certified diabetes educators certified are about 4300. However, the accessibility of the patients to the specialists still remains poor. Nurses, dietitians, medical technologists, pharmacists and physical therapists are eligible to take the examination of certified diabetes educator. They must be skilled at identifying the background of patients to improve care and health through life-style modification. Education for care and treatment consists of medical and educational models. In both of these, here are specific processes of diagnosis and therapy: along with medical diagnosis and treatment, through physical and laboratory examinations, assessment of the patient for indication of a curriculum by test of knowledge, skill and attitude for adequate educational therapy is necessary.