After you: conversations between patients and healthcare professionals in planning for end of life care

Background

This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.

Methods

The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N?=?18; 10 men; 8 women; median age 75); nominated relatives (N?=?11; 7 women; 4 men; median age 65) and healthcare professionals (N?=?15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.

Results

Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.

Conclusions

This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

     

Consensus guidelines on analgesia and sedation in dying intensive care unit patients

Background

Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia.

Methods

Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12).

Results

After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU.

Conclusion

Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.     

Living with AIDS in Uganda: a qualitative study of patients’ and families’ experiences following referral to hospice

Background

Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to reach all of those in need and patients still present with advanced disease. This paper reports findings from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and support provided to them by HAU was perceived.

Methods

We invited patients with AIDS and their relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were interviewed in their homes approximately four weeks after the patient’s enrolment at HAU. Interviews were translated, transcribed and analysed using narrative and thematic approaches.

Results

Interviews were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers experienced before help was sought or accessed. Patients reported a wide range of severe physical symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient and family situation, both motivators and barriers to help seeking behaviour. Hospice services were perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all the expectations that patients had.

Conclusion

Hospice care was highly valued and perceived to effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants noted a strong sense of being “cared for”. However, poverty and a sense of stigma were widespread. Further research is needed to understand how poverty and stigma can be effectively managed in hospice care for patients for advanced AIDS and their families.

     

Heterogeneity of childhood conduct disorder: further evidence of a subtype of conduct disorder linked to bipolar disorder

BACKGROUND: Although a small literature suggests that conduct disorder (CD) co-occurs with bipolar disorder (BPD), little is known about this overlap. Thus, we investigated the familial association of antisocial disorders (CD and/or antisocial personality disorder (ASPD)) and BPD among the first degree relatives of children with CD with and without comorbid BPD. METHODS: We compared relatives of four proband groups defined by the presence or absence of CD and BPD in the proband: (1) CD+BPD (N=26 probands, 92 relatives; (2) BPD without CD (BPD) (N=19 probands, 53 relatives); (3) CD without BPD (CD) (N=16 probands, 58 relatives); and (4) controls without BPD or CD (N=102 probands, 338 relatives). All subjects were evaluated with structured diagnostic interviews. Diagnoses of relatives were made blind to the diagnoses of probands. RESULTS: The results show high rates of antisocial disorders and BPD in relatives of children with CD+BPD. Moreover, antisocial disorders and BPD cosegregated among the relatives of children with CD+BPD. While relatives of both CD proband groups with and without BPD had high rates of CD/ASPD, the combined condition CD/ASPD+BPD was found exclusively among relatives of probands with CD+BPD. Limitations: Since we pooled two datasets, subjects were not all evaluated at the same time. Also, the lack of direct psychiatric interviews with children younger than 12 may have decreased the sensitivity of some diagnoses. CONCLUSIONS: These family-genetic findings suggest that CD and BPD represent separate disorders. Furthermore, they suggest that the comorbid condition of CD+BPD may be a distinct nosological entity. This suggests that clinicians treating CD or BPD children should consider the treatment implications of this comorbid condition.     

Facilitators and barriers for GP�Cpatient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants

Background

Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.

Aim

To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.

Design of study

Qualitative study with focus groups, interviews, and questionnaires.

Setting

GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.

Method

GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.

Results

Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors'' delay and strong demands from patients'' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients'' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.

Conclusion

The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.     

A qualitative analysis of educational,professional and socio-cultural issues affecting interprofessional collaboration in oncology palliative care

ObjectivesOncology palliative care (PC) services seek to improve quality of life in patients with cancer. PC providers face significant systemic obstacles, stemming from insufficient collaboration between healthcare providers. This study explores these obstacles and strategies to help facilitate successful collaboration amongst healthcare providers at a systemic level.MethodsA multicenter qualitative study was conducted via interviews and focus groups. Fifty employees in Italian-speaking Switzerland were interviewed, along with ten relatives of oncology patients. Framework analysis was used to identify and categorize the most prominent themes.ResultsThree main themes were identified: knowledge of and connection to other healthcare approaches; beliefs, attitudes and behavior regarding collaboration; and values, attitudes and beliefs towards life, end-of-life and optimal care approaches for oncology patients.ConclusionsStrategies that promote interprofessional collaboration and oncology PC services should foster a cultural shift towards perceiving these services as a medical specialty, thereby contributing to quality patient care.ImplicationsAn overview of potential limitations is provided, in addition to a timeline of interprofessional collaboration which would help to optimize oncology PC services.     

Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams

Objective

To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).

Are UK primary care teams formally identifying patients for palliative care before they die?

Background

The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification.

Aim

To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death.

Design and setting

Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed.

Method

Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed.

Results

In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital.

Conclusion

Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.     

The role of dentist in palliative care team

The palliative doctor gives the 'touch of God' as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.     

Early identification of palliative care patients in general practice: development of RADboud indicators for PAlliative Care Needs (RADPAC)

Background

According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined.

Aim

The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care.

Design

A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs.

Method

The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care.

Results

Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour.

Conclusion

The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.     

Information to and communication with cancer patients: improvements and psychosocial correlates in a comprehensive care program for patients and their relatives

Between 1987 and 1989, 177 cancer patients who were to receive intensive chemotherapy with curative intention, participated in a comprehensive care project with the aim of improving their total situation, and that of their relatives (n = 120). A number of steps were taken to improve, among other things, the information to, and communication with, patients and their relatives. Compared with a pre-project evaluation in 54 patients and 24 relatives, significantly lower problem scores were seen in most aspects relating to interaction with medical staff. Strong associations were seen between, on the one hand, various aspects of patient- and relative-staff interaction and, on the other, psychosocial problems, although they were weaker for problems relating to information, than for communication and control problems.     

Perspectives on care and communication involving incurably ill Turkish and Moroccan patients,relatives and professionals: a systematic literature review

Background

Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care.

Methods

A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality.

Results

Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems.

Conclusions

This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient’s recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients’ socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.

     

Factors related to fear in patients undergoing cataract surgery: a qualitative study focusing on factors associated with fear and reassurance among patients who need to undergo cataract surgery

The aim was to identify factors that are related to fear among patients who need to undergo cataract surgery. The data were collected by focus group interviews (n=27). The doctor-patient relationship, patient education, the wait, hospital organization, social support, sensations, previous experience, outcome of surgery, and coping strategies were identified as the main factors that contribute to feelings of fear related to cataract surgery. Five stages of fear were identified: at home after diagnosis, during preparation for surgery at the hospital, the day of surgery, the post-operative visits, and the period after these follow-up visits at home. A model regarding the factors related to fear in patients awaiting cataract surgery was developed, which emphasizes the importance of a good doctor-patient relationship, and the need for patient education that is tailored to the individual patients.     

ACGME requirements for end-of-life training in selected residency and fellowship programs: a status report.

INTRODUCTION: National recommendations have been developed for physicians' end-of-life (EOL) education. No comprehensive assessment has been done to examine postgraduate (residency and fellowship) EOL training. METHOD: The authors reviewed the EOL content for 46 specialties in postgraduate training programs that affect the care of seriously ill and dying patients, using data from the 2000/2001 AMA Graduate Medical Education Directory. RESULTS: Internal medicine, geriatrics, and neurology contained the most comprehensive EOL requirements. Most surgical specialties contained no EOL requirement except ethics. Ethics (n = 25) and psychosocial care (n = 22) were the most common EOL domains mandated, although specific EOL content was not specified. Training in EOL communication (n = 1), personal awareness (n = 3), and EOL clinical experiences (n = 5) were the least often required instructional domains. Instruction in pain assessment and management was required in only one surgical specialty. CONCLUSIONS: The lack of comprehensive EOL training requirements may help explain the known problems in physicians' EOL care. Major reform in EOL requirements is needed at the level of residency review committees.     

Experiences of patients,family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international,multicenter, prospective,mixed method study

Background

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.

Methods/Design

Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.

Discussion

This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.

     

拔牙患者畏惧程度的问卷调查和分析

目的 调查分析患者对拔牙术的畏惧程度,为心理治疗提供帮助。方法 采用问卷调查方式,设计15个问题,由患者独立填写完成,对每个问题按评分标准计分,以例数、百分率、或得分均值进行比较或排列顺序。结果 重度畏惧中女性明显高于男性（P〈0．05）。45岁以下年轻成人属重度畏惧者居多（70．6％）。局部麻醉注射、检查叩击到患牙剧痛、用牙钳运动患牙脱住拔出,是畏惧程度最高的3个环节,排序分别为第7、第6、第5位。重度畏俱受亲友、同事和自身痛苦拔牙经历的影响较大。结论 患者对拔牙术各环节的畏惧程度不同,应针对拔牙术各方面,特别是对听过、看过或有痛苦拔牙经历者及上述畏惧程度最高的3个环节,做好心理疏导工作,以取得良好疗效。     

Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues

Background  

Out-of-hours general practitioners (GPs) cover the community over a significant proportion of a given week, and palliative care patients are seen as a priority. Little is known about how well these GPs feel supported in their line of work and whether communication exchanges work well for the proportion of their patients who have palliative care needs. For this study, GPs who provide out-of-hours care were interviewed in order to explore factors that they identified as detrimental or beneficial for good communication between themselves, patients, relatives and other professionals, specifically to palliative care encounters.     

The information-seeking behaviours of partners of men with prostate cancer: a qualitative pilot study

This pilot study explores in depth the information-seeking behaviours of partners of men with prostate cancer. Six men with prostate cancer and their partners participated in one mini focus group discussion or four couple interviews. Theme analysis by two independent analysts produced three related themes: partners' information-seeking behaviours; partners' information-avoiding behaviours; and the conflict between seeking and avoiding information. The information-seeking behaviours of partners were individualistic, with some partners seeking voluminous information and others avoiding information. Partners sought information to help reduce their feelings of anxiety and uncertainty, to help them participate in the decision-making process, to help them care for their partner and to ensure that they had their information needs met. Partners avoided information to reduce their levels of fear and worry and to maintain a sense of normality. They failed to seek information from healthcare professionals because they felt disempowered and pressurised for time during patient-physician consultations. The information-seeking behaviours of partners changed over time and across situations and their behaviours were sometimes different from those of their partners (the patients), with some partners exhibiting more information-seeking behaviour than patients. The findings within each of these themes and their practice implications are discussed in this paper.