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.     

Quality of Life in Cancer Patients Receiving Palliative Care

Background:

The main focus of palliative care services is to improve the patient’s quality of life (QOL), which is defined as the subjective evaluation of life as a whole or the patient’s appraisal and satisfaction with their current level of functioning compared with what they perceive to be possible or ideal.

Aims:

In this prospective study we attempt to validate the Hindi version of a questionnaire designed by the functional assessment of chronic illness therapy (FACIT) measurement system; to measure the subjective QOL of cancer patients receiving home-based palliative care, determine ease of use of the questionnaire and correlate the QOL of these patients with the objective assessment of their Karnofsky’s performance status and their numerical pain score.

Settings and Design:

One hundred cancer patients receiving free home-based palliative care in New Delhi, India.

Materials and Methods:

A multidisciplinary palliative home care team using the Functional Assessment of Cancer Therapy-General (FACT-G^©) questionnaire in Hindi.

Statistical Analysis Used:

Microsoft Excel Correlation.

Results:

The FACT-G^© questionnaire in Hindi is a useful tool in measuring QOL and can be used to monitor the patient’s progress and symptom control during the course of the disease. It is simple to use and does not take too much time to complete. The results are tabulated in English and can be used for comparison purposes globally; the scoring process is very simple.

Conclusions:

Increasing QOL and KPS showed a positive correlation whereas increasing pain and better QOL show negative correlation, as do better performance status and increasing pain score.     

Creation of Minimum Standard Tool for Palliative Care in India and Self-evaluation of Palliative Care Programs Using It

Background:

It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved.

Aims:

(1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country.

Materials and Methods:

The working group prepared a “standards” document, which had two parts – the first composed of eight “essential” components and the second, 22 “desirable” components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale.

Results:

Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards.

Conclusions:

We demonstrated that the “standards tool” could be applied effectively in practice for self-evaluation of quality of palliative care services.     

Palliative Care Awareness among Indian Undergraduate Health Care Students: A Needs-Assessment Study to Determine Incorporation of Palliative Care Education in Undergraduate Medical, Nursing and Allied Health Education

Purpose:

Quality assurance data worldwide suggests that the current healthcare system is providing inadequate care for the dying. Current health care education focuses entirely on cure and care is almost compromised or nonexistent in end-of-life settings. The purpose of this study was to determine palliative care awareness among Indian undergraduate health care students and assess the need for incorporating palliative medicine education into undergraduate health education.

Materials and Methods:

A non-randomized population based study was conducted using 39-point questionnaire. Undergraduate medical, nursing and allied health students of Manipal University were the target population.

Results:

326 students participated in the study. 61.7% of students feel that resuscitation is appropriate in advanced metastatic cancer. 67.5% feel that all dying patients need palliative care and most of the students think that palliative care is equivalent to pain medicine, geriatric medicine and rehabilitation medicine. 89% of students think that Morphine causes addiction in palliative care setting. 60.7% of students feel that prognosis should only be communicated to the family.

Conclusion:

The outcomes of the study showed that the basic knowledge of palliative care among students was inadequate, and students are unprepared and uncertain in their approach of delivering end-of-life care.     

Study of Nurses�� Knowledge about Palliative Care: A Quantitative Cross-sectional Survey

Context:

Studies have documented that nurses and other health care professionals are inadequately prepared to care for patients in palliative care. Several reasons have been identified including inadequacies in nursing education, absence of curriculum content related to pain management, and knowledge related to pain and palliative care.

Aims:

The objective of this paper was to assess the knowledge about palliative care amongst nursing professionals using the palliative care knowledge test (PCKT).

Settings and Design:

Cross-sectional survey of 363 nurses in a multispecialty hospital.

Materials and Methods:

The study utilized a self-report questionnaire- PCKT developed by Nakazawa et al., which had 20 items (statements about palliative care) for each of which the person had to indicate ‘correct’, ‘incorrect’, or ‘unsure.’ The PCKT had 5 subscales (philosophy- 2 items, pain- 6 items, dyspnea- 4 items, psychiatric problems- 4 items, and gastro-intestinal problems- 4 items).

Statistical Analysis Used:

Comparison across individual and professional variables for both dimensions were done using one-way ANOVA, and correlations were done using Karl-Pearson''s co-efficient using SPSS version 16.0 for Windows.

Results:

The overall total score of PCKT was 7.16 ± 2.69 (35.8%). The philosophy score was 73 ± .65 (36.5%), pain score was 2.09 ± 1.19 (34.83%), dyspnea score was 1.13 ± .95 (28.25%), psychiatric problems score was 1.83 ± 1.02 (45.75%), and gastro-intestinal problems score was 1.36 ± .97 (34%). (P = .00). The female nurses scored higher than their male counterparts, but the difference was not significant (P > .05).

Conclusions:

Overall level of knowledge about palliative care was poor, and nurses had a greater knowledge about psychiatric problems and philosophy than the other aspects indicated in PCKT.     

What Does the Informal Caregiver of a Terminally Ill Cancer Patient Need? A Study from a Cancer Centre

Aims:

To assess the needs of informal caregivers of terminally ill cancer patients.

Materials and Methods:

Fifty four informal caregivers of patients registered in our palliative care service were interviewed 3–6 months after the death of the patient with the help of a semistructured questionnaire covering the physical, medical, psychological, social, and information domains.

Results:

Most of the caregivers were middle aged and had no prior experience of care giving. The caregivers were satisfied by the information and medical support provided to them by their treatment team. Most had an “emergency plan”. Caregivers had unmet needs including homecare, psychological support, and financial help.

Conclusions:

informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.     

Exploring States of Panacea and Perfidy of Family and Community Volunteerism in Palliative Care Giving in Kanye CHBC Program, Botswana

Aim:

The study aims to explore the attitudes and perceptions of family and community palliative care givers pertaining to volunteerism.

Objective:

The main objective is to involve palliative caregivers and their supervisors in assessing their contribution to care and evaluate their state of volunteerism.

Materials and Methods:

The study attracted qualitative design and involved 82 palliative caregivers in 10 focus group discussions; one-to-one interviews with the nurses supervising them. Two slightly different interview guides were used as research instruments.

Results:

Findings indicate that palliative care giving volunteerism is motivated and sustained by: (1) Principles of love emanating from blood and kinship relations; (2) Patriotism and community responsibility over one another; (3) Adherence and respect of their culture and government call. Volunteerism was also found challenged by: (1) Predominance of the elderly and lowly educated women; (2) Poverty and heavy caseload; (3) Being shunned by the youth; (4) And lack of morale, recognition and motivation.

Recommendations:

The study recommends: (1) Socializing boys early enough in life into care giving; (2) Offering incentives to the caregivers; (3) Use of public forums to persuade men to accept helping women in carrying out care giving duties; (4) And enlisting support of all leaders to advocate for men’s involvement in care giving.     

Palliative Care for Patients with Malignancy and End-Stage Renal Failure on Peritoneal Dialysis

Background:

Many patients on peritoneal dialysis experience a poor quality of life because of a high burden of comorbid conditions. Dialysists must pay more attention to reducing a patient''s pain and suffering, both physical and psychological and improve the quality of life for the patients as much as possible. A consensus regarding eligibility for palliative care and the delivery of these inventions does not currently exist.

Objective:

The present study aimed to describe the implementation of palliative care for end-stage renal failure patients on peritoneal dialysis.

Design:

A report on three cases.

Materials and Methods:

This study included three outpatients on peritoneal dialysis who received palliative care and died between January 2008 and June 2010.

Measurements:

The patients'' comorbidities, nutritional status, and functional status were evaluated using the Charlson comorbidity score, subjective global assessment, and Karnofsky Performance Score index, respectively. The Hamilton depression and Hamilton anxiety scales were also employed. The patients'' clinical manifestations and treatments were reviewed.

Results:

Each patient displayed 11-16 symptoms. The Charlson comorbidity scores were from 11 to 13, the subjective global assessment indicated that two patients were class assigned to “C” and one to class “B”, and the mean Karnofsky index was <40. Among these patients, all experienced depression and two experienced anxiety, Low doses of hypertonic glucose solutions, skin care, psychological services, and tranquillizers were intermittently used to alleviate symptoms, after making the decision to terminate dialysis. The patients died 5 days to 2 months after dialysis withdrawal.

Conclusion:

The considerable burden associated with comorbid conditions, malnutrition, poor functional status, and serious psychological problems are predictors of poor patient prognoses. Withdrawal of dialysis, palliative care, and psychological interventions can reduce patient distress and improve the quality of life before death, with the care provided.     

Effectiveness of "palliative care information booklet" in enhancing nurses' knowledge

Context:

Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care.

Aims:

In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge.

Settings and Design:

Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest – posttest, pre - experimental design.

Materials and Methods:

Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual) and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically.

Statistical analysis used:

Microsoft Excel and Statistical Package for Social Science package.

Results:

The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the nurses.

Conclusions:

The information booklet was effective in enriching the knowledge of nurses on palliative care. Enhancing the nurse’s knowledge about palliative care will promote their understanding of the needs of the advanced stage patients and will enable them to provide quality care.     

Healthcare Workers Knowledge and Attitude Toward Palliative Care in an Emerging Tertiary Centre in South-West Nigeria

Background:

Palliative care is an emerging area of medicine with potential to affect positively many chronically ill patients. This study investigated the knowledge and attitude of healthcare workers in a tertiary level hospital in Nigeria where a palliative care unit is being established.

Material and Methods:

The study was a cross-sectional questionnaire-based study carried out among healthcare workers in Ekiti State University Teaching Hospital, Ado-Ekiti, south-west Nigeria. The questionnaire had sections about definition of palliative care, its philosophy, communication issues, medications, and contexts about its practice. The information obtained from the questionnaire was coded, entered, and analyzed using IBM SPSS version 19.

Results:

A total of 170 questionnaires were returned within the stipulated time frame with response rate of 66.7%. Majority, (135, 86%) respondents felt palliative care was about the active management of the dying while 70.5% of respondents equated palliative care to pain management. Regarding the philosophy of palliative care, 70 (57.9%) thought that it affirms life while 116 (78.4%) felt palliative care recognizes dying as a normal process. One hundred and twenty-two (78.7%) respondents were of the opinion that all dying patients would require palliative care. The patient should be told about the prognosis according to 122 (83%) respondents and not doing so could lead to lack of trust (85%). Regarding the area of opioid use in palliative care, 76% of respondents agreed that morphine improves the quality of life of patients.

Conclusion:

There are plausible gaps in the knowledge of the healthcare workers in the area of palliative care. Interventions are needed to improve their capacity.     

Pattern of referral of noncancer patients to palliative care in the eastern province of saudi arabia

Aim:

The palliative care (PC) needs of patients with noncancer life-threatening illnesses are comparable to that of cancer patients. This report describes the contribution of noncancer patients to the population of PC patients in a tertiary care hospital in the Eastern Province of Saudi Arabia.

Materials and Methods:

This is a retrospective review of the “palliative care inpatient database” of 21 months.

Results:

From 474 patients, 20 (4.2%) had a noncancer diagnosis. The main reason for the referral of noncancer patients was pain control. The most prevalent diagnoses were sickle cell disease (SCD) in 6 (30%) patients and peripheral arterial disease (PAD) in 5 (25%).

Conclusions:

These findings suggest that the PC needs of noncancer patients are largely unmet in our region. Further efforts are necessary to advance noncancer PC in Saudi Arabia. The PC needs of patients with SCD and PAD need to be addressed in future research.     

Reporting characteristics of cancer pain: a systematic review and quantitative analysis of research publications in palliative care journals

Objective:

A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature.

Materials and Methods:

Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract.

Results:

During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain.

Conclusion:

While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.     

Effects of Palliative Care Training Program on Knowledge, Attitudes, Beliefs and Experiences Among Student Physiotherapists: A Preliminary Quasi-experimental Study

Background:

Physiotherapists play an inherent role in the multidisciplinary palliative care team. Existing knowledge, attitudes, beliefs and experiences influence their team participation in palliative care.

Aims:

The objective of this study was to assess the changes in knowledge, attitudes, beliefs and experiences among student physiotherapists who attended a palliative care training program.

Settings and Design:

Preliminary quasi-experimental study design, conducted at an academic institution.

Materials and Methods:

Fifty-two student physiotherapists of either gender (12 male, 40 female) of age (20.51±1.78 years) who attended a palliative care training program which comprised lectures and case examples of six-hours duration participated in this study. The study was performed after getting institutional approval and obtaining participants’ written informed consent. The lecture content comprised WHO definition of palliative care, spiritual aspects of life, death and healing, principles, levels and models of palliative care, and role of physiotherapists in a palliative care team. The physical therapy in palliative care-knowledge, attitudes, beliefs and experiences scale (PTiPC-KABE Scale)- modified from palliative care attitudes scale were used for assessing the participants before and after the program.

Statistical Analysis:

Paired t-test and Wilcoxon signed rank test at 95% confidence interval using SPSS 11.5 for Windows.

Results:

Statistically significant differences (P<0.05) were noted for all four subscales- knowledge (7.84±4.61 points), attitudes (9.46±8.06 points), beliefs (4.88±3.29 points) and experiences (15.8±11.28 points) out of a total score of 104 points.

Conclusions:

The focus-group training program produced a significant positive change about palliative care in knowledge, attitudes, beliefs and experiences among student physiotherapists.     

Awareness of palliative care among diploma nursing students

Background:

The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum.

Objectives:

(1) To assess the level of knowledge of nursing students on palliative care; (2) To identify the attitude of nursing students towards palliative care; (3) To find the correlation between the knowledge and attitude of nursing students; (4) To find the association between nursing students’ knowledge, attitude and selected demographic variables.

Materials and Methods:

A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district.

Results:

The data analyzed showed that the majority (51%) of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64) on palliative care and 92.8% of them had favorable attitude (56.7± 8.5) towards palliative care. The chi-square showed a significant association between knowledge and age (χ²=18.52,P<0.01) of the nursing students.

Conclusion:

Palliative care aspects should be incorporated in the diploma nursing curriculum.     

Palliative Care in Parkinson's Disease: Role of Cognitive Behavior Therapy

Background:

Parkinson''s disease (PD) is a chronic, progressive, neurodegenerative disorder that leads to the classic features of akinesia (encompassing hypokinesia and bradykinesia), tremor, rigidity and postural instability. Other non-motor complications include depression, fatigue, pain, and sleep disturbances. For the management of these complications, non-pharmacological techniques, such as Cognitive-behavioral therapy (CBT) can be used. This can focus on overt behavior and underlying cognitions and train the patient in coping strategies to obtain better symptom control.

Objectives:

To review studies on CBT as palliative care in PD patients.

Materials and Methods:

A survey was conducted for all available English-language studies by means of a MEDLINE search. Keywords in the searches included Parkinson''s disease, palliative care, and cognitive behavior therapy. All articles that reported the cognitive behavior therapy and palliative care in a group of PD patients regardless of the method used by the researchers were identified and analyzed.

Result and Conclusion:

CBT has a strong evidence base for its use and has proven to be an effective treatment in management of people with chronic pain, fatigue syndrome, depression and sleep disturbances, with efficacy that lasts beyond the duration of treatment. Although PD patients suffer from these complications, there are only a few studies on administration of CBT on them. Considering its effectiveness, CBT can be used as an option for palliative care for PD patients, directed toward improving the patient''s functional status, clinical disability and quality of life. Further studies are required in this area.