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.     

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.     

Impact of pain and palliative care services on patients

Background:

Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world.

Aim:

The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables.

Materials and Methods:

The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages.

Results:

The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment.

Conclusion:

It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.     

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.     

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.     

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.     

Low molecular weight heparin: a practical approach in deep venous thrombosis in palliative care

Introduction:

Deep vein thrombosis (DVT) is one of the many cause of pain in advance cases of carcinoma cervix. The most widely used agent for combating DVT is unfractionated heparin.

Aims:

Aims of this study is to see the efficacy of the use of low molecular weight (LMW) haparin and its practical utility in palliative care settings.

Materials and Methods:

Twelve cases of established DVT received enoxaparin at 40 mg/m with warfarin.

Results:

There was 70% resolution of limb swelling in seven cases. Out of remaining four cases took two months to resolve and one case did not resolve completely.

Conclusions:

LMV heparin is effective in palliative care setting and also has added advantage of subcutaneous route of administration.     

Experiences, knowledge, and opinions on palliative care among Romanian general practitioners

Aim

To assess experience, knowledge, and opinions of Romanian general practitioners (GPs) on palliative health care in Romania.

Methods

A questionnaire survey was performed among 1283 GPs in five districts of Romania in 2004. The data were collected on the GPs’ self-assessed experience in, knowledge of, and opinion on palliative care, entered into a database, and analyzed. The GPs were also asked to indicate if they needed to improve their knowledge about palliative care.

Results

The response rate was 71%. GPs mostly reported having limited experience in providing palliative care, with 24% reporting to have provided palliative care frequently, and 55% reporting to have it provided sometimes. Significant correlations were found between the GPs’ experience in palliative care provision and their age, sex, and place of work. The majority of Romanian GPs reported that their medical knowledge was inadequate for the provision of care to terminal patients at home. Over 80% of GPs agreed to develop palliative care services and to participate in a training program.

Conclusion

GPs in Romania reported to recognize the need for improvement of palliative care delivery in their country. They expressed the need for better knowledge of palliative care and agreed that multidisciplinary teams to provide palliative care at home would be the best form of delivering this type of health care.Palliative care is a relatively new form of health care provision in Central-Eastern European (CEE) countries unlike in Western Europe, where it has been an established health care specialty for decades (1,2). The most widely used model of palliative care provision in CEE countries is the hospice model. However, the number and availability of hospices and financial means allocated to these institutions have been insufficient, and the population in need of palliative care has been increasing. Palliative care professionals are less focused on the needs of patients and possible development of a new model for palliative care provision than they are on the “vested interests” of the model, ie, preventing the hospices in which they work from being closed down.With aging of the population, the morbidity profile in CEE countries has changed and so have the health care needs. The need for nursing and care, including palliative care, is increasing and largely uneven distribution of medical care facilities between urban and rural areas only aggravates the problem. All these factors bring the palliative care issues to focus (3).Until recently, palliative care in Romania and many CEE countries was primarily associated with terminal care of patients with cancer and the hospice movement (4,5). In the last few years, however, the hospice model as a preferred model of palliative care has been reevaluated and questioned by many (3). Because of the over-institutionalization of health care and the decrease in the number of hospital beds, health care policymakers are increasingly thinking about promoting palliative care at home, which would be supported by a palliative care team (1). Furthermore, people in most CEE countries prefer to die at home, as there is still a strong tradition of family care (6).The expectation of the Romanian primary health care system, which includes general practitioners (GPs) and nurses, to play an important role in palliative care at home is relatively far from realization. Not only that this aspect of health care provision is new and partly unknown to great majority of GPs, but the complementary services and expertise in home care and pain management are not well developed either. This problem is also present in Croatia, Hungary, and Slovakia (1), where various initiatives are being taken to develop palliative care as the need for it increases. As Doyle et al (7) have stated, palliative care at home is dependent on the attitudes and perceptions of family physicians and wider socio-cultural attitudes. Also, the lack of information on the latest techniques and developments in palliative care may prohibit the development of that health care area (8).The first hospices in Romania were established in Oradea and Brasov (9); by 2004, five hospices had been opened. Although a government policy from 1998 tried to strengthen the role of the GP in the health care delivery system (10), no systematic attention had been given to palliative care in general practice or hospitals until 2002 (4). Thereafter, family physicians have increasingly started to provide palliative care, but they have not been reimbursed for the service. Thus, it may be said that the efforts to develop a system of palliative care provision in Romania are still not organized.We asked GPs in five districts in Romania to self-assess their experience in palliative care provision, their knowledge and need for better education in palliative care, and their opinion on the best way to deliver this type of care.     

When Palliative Treatment Achieves More Than Palliation: Instances of Long-term Survival after Palliative Radiotherapy

Context:

Palliative radiotherapy aims at symptom alleviation and improvement of quality of life. It may be effective in conferring a reasonable quantum of local control, as well as possibly prolonging survival on the short term. However, there can be rare instances where long-term survival, or even cure, results from palliative radiotherapy, which mostly uses sub-therapeutic doses.

Aim:

To categorize and characterize the patients with long-term survival and/or cure after palliative radiotherapy.

Materials and Methods:

This study is a retrospective analysis of hospital records of patients treated with palliative radiotherapy from 2001 to 2006 at the Regional Cancer Centre, Shimla.

Results:

Of the analyzed 963 patients who received palliative radiotherapy, 2.4% (n = 23) survived at least 5 years, with a large majority of these surviving patients (73.9%, n = 17) being free of disease.

Conclusions:

In addition to providing valuable symptom relief, palliative radiotherapy utilizing sub-therapeutic doses may, in a small proportion of patients, bestow long-term survival, and possibly cure. Rationally, such a favorable, but rare outcome cannot be expected with supportive care alone.     

Attitudes to specialist palliative care and advance care planning in people with COPD: a multi-national survey of palliative and respiratory medicine specialists

Background

Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD.

Methods

An online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom.

Results

Five hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p <?0.0001), what death and dying might be like (p?<?0.0001) and prognosis (p =?0.004). Themes highlighted in open responses included: inadequate, fragmented models of care, with limited collaboration or support from palliative care services.

Conclusions

While both specialties recognised the significant palliative care and ACP needs of people with advanced COPD, in reality few patients access these elements of care. Formal collaboration and bi-directional support between respiratory and palliative medicine, are required to address these unmet needs.

     

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review

Background

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers

Aim

To explore factors that support partnership working between specialist and generalist palliative care providers.

Design

Systematic review.

Method

A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011.

Results

Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care.

Conclusion

Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.     

Opinions of the Dutch public on palliative sedation: a mixed-methods approach

Background

Palliative sedation is defined as deliberately lowering a patient’s consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia.

Aim

To inform healthcare professionals about attitudes of the general public regarding palliative sedation.

Design and setting

A cross-sectional survey among members of the Dutch general public followed by qualitative interviews.

Method

One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed.

Results

In total, 22% of the responders indicated knowing the term ‘palliative sedation’. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient’s life (79%, P = 0.54).

Conclusion

Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options.     

Should Patients and Family be Involved in “Do Not Resuscitate” Decisions? Views of Oncology and Palliative Care Doctors and Nurses

Background:

“Do not resuscitate” (DNR) orders are put in place where cardiopulmonary resuscitation is inappropriate. However, it is unclear who should be involved in discussions and decisions around DNR orders.

Aim:

The aim was to determine the views of oncology and palliative care doctors and nurses on DNR orders.

Materials and Methods:

A questionnaire survey was conducted on 146 doctors and nurses in oncology and palliative care working within a tertiary specialist cancer center in Singapore.

Results:

Perceived care differences as a result of DNR determinations led to 50.7% of respondents reporting concerns that a DNR order would mean that the patient received a substandard level of care. On the matter of DNR discussions, majority thought that patients (78.8%) and the next of kin (78.1%) should be involved though with whom the ultimate decision lay differed. There was also a wide range of views on the most appropriate time to have a DNR discussion.

Conclusions:

From the viewpoint of oncology and palliative care healthcare professionals, patients should be involved at least in discussing if not in the determination of DNR orders, challenging the norm of familial determination in the Asian context. The varied responses highlight the complexity of decision making on issues relating to the end of life. Thus, it is important to take into account the innumerable bio-psychosocial, practical, and ethical factors that are involved within such deliberations.     

Hypnotherapy: fact or fiction: a review in palliative care and opinions of health professionals

Context:

Complementary medicine like hypnotherapy is often used for pain and palliative care. Health professionals vary in views about hypnotherapy, its utility, value, and attitudes.

Aims:

To understand the opinions of health professionals on hypnotherapy.

Settings and Design:

A semi-qualitative method to survey opinions of the health professionals from various disciplines attending a programme on hypnotherapy was conducted.

Materials and Methods:

The survey form consisted of 32 statements about hypnosis and hypnotherapy. Participants were asked to indicate whether they agreed, disagreed, or were not sure about each statement. A qualitative feedback form was used to obtain further views about hypnotherapy.

Statistical Analysis Used:

Percentage, frequency distribution.

Results:

The sample consisted of 21 participants from various disciplines. Two-thirds of the participants gave correct responses to statements on dangerousness of hypnosis (90%), weak mind and hypnosis (86%), and hypnosis as therapy (81%). The participants gave incorrect responses about losing control in hypnosis (57%), hypnosis being in sleep (62%), and becoming dependent on hypnotist (62%). Participants were not sure if one could not hear the hypnotist one is not hypnotized (43%) about the responses on gender and hypnosis (38%), hypnosis leading to revealing secrets (23%).

Conclusions:

Despite patients using complementary medicine services, often health professionals are unaware of the issues associated with these services. These myths may interfere in using hypnotherapy as therapeutic tool in palliative care. It is important for health professionals to have an appropriate and evidence-based understanding about the complementary therapies including hypnotherapy.