Estimating needs in life threatening illness: a feasibility study to assess the views of patients and doctors

BACKGROUND: Provision of palliative care for patients with non-cancer conditions is hindered by the difficulty of predicting when people will die and fear of causing distress by raising end-of-life issues. OBJECTIVES: To compare patients' and professionals' (1) estimations of prognosis; (2) perceptions of the seriousness of the illness and needs for supportive care; and (3) acceptability of this sensitive research, in end-stage cancer and non-cancer diseases. DESIGN: Prospective cohort study. SETTING: A teaching hospital and a Marie Curie hospice in London. SUBJECTS: Twenty patients with advanced non-malignant disease (heart failure, chronic obstructive pulmonary disease and renal failure) and 20 patients with advanced cancer, and their physicians in charge. Method: A feasibility study using vignettes to aid patients and doctors estimate of prognoses. Main outcome measures were (1) patients' and physicians' estimates of health status, care needs and prognosis; and (2) patient survival. RESULTS: Patients were willing and able to estimate their own life expectancy and cancer patients correctly estimated that they had a poorer prognosis than non-cancer patients. Non-cancer patients perceived that they had similar needs for supportive care as cancer patients. Physicians made little distinction in palliative care needs between patients with and without cancer, but tended to make more pessimistic estimates of prognosis in non-cancer patients. CONCLUSIONS: Patients are able to judge their health status and life expectancy and do not object to questions about end-of-life care. Cancer and non-cancer patients have similar needs for supportive care. We need further evidence on the value of self-rated prognosis and how to provide palliative and supportive care for all patients who are near death.     

'No control whatsoever': end-of-life care on a medical teaching unit from the perspective of family members

BACKGROUND: In our institution, about one third of annual deaths occur on the general medical teaching unit. (MTU) The average patient dies on the MTU from non-malignant disease after 4 weeks in hospital, and approximately 20% of available beds on the MTU at any time are occupied by patients who will not survive to discharge, but quality of end-of-life care on the MTU is not routinely assessed. AIM: To identify areas for improvement in delivering high quality end-of-life care on the medical teaching unit. DESIGN: Qualitative study using semi-structured interviews. METHODS: Six months after the death of the patient, next of kin were sent a letter inviting participation; 75 family members were screened and 50 invitations were mailed out. Interviews were conducted in the home. Eliciting narratives and direct questioning about important aspects of end-of-life care were used. RESULTS: Six next of kin agreed to participate. All patients were described as seriously and chronically ill. None died of cancer. Deaths were not described as 'good', and some comments suggested that death was unexpected and not inevitable. There were few concerns about pain control or unnecessary suffering. Proactive efforts to provide prognostic information or end-of-life care were not described. Survival, not palliation, was of central importance. Consistent with this priority, satisfaction with care provided in the intensive care unit was high. Follow-up after death was desired, especially if autopsy results were available. DISCUSSION: Earlier discussions about treatment failure and end-of-life care, and the need for palliation, appear to be central to improving the quality of end-of-life care for patients dying on our medical teaching unit. Our results are consistent with other studies in this area.     

Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study

Goals of work Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers.Subjects and methods We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants narratives were analysed using qualitative methodology.Main results Distinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death.Conclusions This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.     

Emotional Numbness Modifies the Effect of End-of-Life Discussions on End-of-Life Care

ContextOverall, end-of-life (EOL) discussions are unrelated to psychological distress and associated with lower rates of aggressive care near death. Nevertheless, patients who report that they feel emotionally numb about their illness might encounter difficulties cognitively processing an EOL discussion.ObjectivesWe hypothesized that emotional numbness would modify the effect of EOL discussions on the receipt of less aggressive EOL care.MethodsData were derived from structured interviews with 290 participants in the federally-funded Coping with Cancer Study, a multisite, prospective cohort study of patients with advanced cancer followed-up till their death. Patients' reports of EOL discussions with their physician and emotional numbness were assessed at a median of 4.6 months before their death. Information about aggressive EOL care (i.e., ventilation, resuscitation in the last week of life, death in the intensive care unit) was obtained from postmortem caregiver interviews and medical charts. Main and interactive effects of EOL discussions and emotional numbness on aggressive EOL care, adjusting for potential confounds, were evaluated using multiple logistic regression.ResultsThe likelihood of aggressive EOL care associated with having EOL discussions increased by a factor of nine (adjusted odds ratio = 9.02, 95% CI 1.37, 59.6, P = 0.022) for every unit increase in a patient's emotional numbness score.ConclusionEmotional numbness diminishes a patient's capacity to benefit from EOL discussions. The EOL decision making may be more effective if clinical communications with emotionally numb patients are avoided.     

Professionals delivering palliative care to people with COPD: qualitative study

This article describes health and social care professionals' perceptions of palliative care and facilitators and barriers to the delivery of such care for patients with advanced chronic obstructive pulmonary disease. Health professionals participated in semi structured interviews and focus groups which were analysed using content analysis. According to participants, care of patients with chronic obstructive pulmonary disease is focused upon the management of symptoms, with emphasis focused predominately on an acute model of care. Key barriers towards the delivery of palliative care included the reluctance to negotiatie end-of-life decisions and a perceived lack of understanding among patients and carers regarding the illness trajectory. Consequently the delivery of palliative care was viewed as a specialist role rather than an integral component of care. There is a need for education and training for health and social care professions to plan and provide high quality end-of-life care.     

Advance care planning for patients with inoperable lung cancer

AIM: To develop and pilot an advance care planning (ACP) intervention for lung cancer nurses to use in discussing end-of-life preferences and choices for care with patients diagnosed with inoperable lung cancer. DESIGN: A prospective qualitative design with semistructured individual patient interviews. A grounded theory approach was used for the analysis. SAMPLE: Fifteen patients took part in ACP discussions with their nurse and nine agreed to be interviewed by a researcher about their perceptions of the intervention. RESULTS: Patients' reactions to the ACP process varied, but they welcomed the recording of their wishes and appreciated the courage of the nurses in bringing up the subject of future care. CONCLUSION: This study explored the role of ACP as a method of enabling patient choice for lung cancer patients in the UK. Further research is needed to determine the components of ACP and the training needs of staff.     

Perceptions of infection control practices among health professionals

Infection control practice is a cornerstone of modern health care. However, there is minimal research into health professionals' perception of infection control practices and how those perceptions influence staff compliance with recommended protocols. The objective of this study was to explore health care professionals' perceptions of infection control practices in relation to the management of infectious diseases. A grounded theory approach was used as the research framework. Semi-structured interviews were completed with a sample of 16 nurses and doctors working at hospitals in Western Australia. Four major categories emerged from the data. These were: knowledge, culture, conflict, and risk assessment. The findings indicate the importance of both individual and organisational factors in determining clinicians' levels of compliance with recommended infection control practices. Identification of the factors that influence health professionals' level of compliance can be used to develop strategies to support long-term compliance with infection control practices.     

The quality of medical care at the end-of-life in the USA: existing barriers and examples of process and outcome measures

CONTEXT: Cancer is a leading cause of morbidity and mortality in the USA and despite many recent advances in detection and treatment, over half a million cancer patients in this country will die from their disease each year. OBJECTIVE: Using cancer as a prototype, we provide a conceptual framework to identify and review barriers to optimal end-of-life care and propose examples of linked process and outcome measures that could be used to evaluate whether standards of optimal end-of-life care are being achieved. METHODS: We propose a conceptual model of end-of-life care and use this model to review the published literature to identify the key goals of optimal end-of-life care and summarize existing barriers to optimal end-of-life care. We then provide examples of process and outcome measures linked to the goals of optimal end-of-life care and domains within the conceptual framework. RESULTS: Within all components of care at the end-of-life--societal attitudes, health care system(s), providers, and patients and their families--there are significant barriers to the quality of care. Some of the most critical barriers to optimal care at the end-of-life in the USA are limited availability, and coverage of, co-ordinated service delivery; poor provider communication and diagnostic skills; limited opportunities for training in palliative care; patient fears and attitudes towards the sick role, and a lack of, or inadequate health insurance. Proposed patient, provider, and system level measures of the quality of care were guided by goals of optimal end-of-life care, and focus on communication about prognosis and risks and benefits of treatment, development of clear and informed treatment goals, delivery of services consistent with treatment goals, and promotion of quality of life. CONCLUSIONS: At present, there are substantial societal, health care system, provider, and patient barriers to obtaining optimal cancer care at the end-of-life. Ongoing discussions about appropriate measures of the quality of end-of-life care are gaining momentum, however. The proposed process and outcome measures for assessing optimal end-of-life care use cancer as a prototype, but are broadly applicable to other patient populations with life-threatening disease.     

End-of-Life Communication: A Retrospective Survey of Representative General Practitioner Networks in Four Countries

ContextEffective communication is central to high-quality end-of-life care.ObjectivesThis study examined the prevalence of general practitioner (GP)-patient discussion of end-of-life topics (according to the GP) in Italy, Spain, Belgium, and The Netherlands and associated patient and care characteristics.MethodsThis cross-sectional, retrospective survey was conducted with representative GP networks. Using a standardized form, GPs recorded the health and care characteristics in the last three months of life, and the discussion of 10 end-of-life topics, of all patients who died under their care. The mean number of topics discussed, the prevalence of discussion of each topic, and patient and care characteristics associated with discussions were estimated per country.ResultsIn total, 4396 nonsudden deaths were included. On average, more topics were discussed in The Netherlands (mean = 6.37), followed by Belgium (4.45), Spain (3.32), and Italy (3.19). The topics most frequently discussed in all countries were “physical complaints” and the “primary diagnosis,” whereas “spiritual and existential issues” were the least frequently discussed. Discussions were most prevalent in The Netherlands, followed by Belgium. The GPs from all countries tended to discuss fewer topics with older patients, noncancer patients, patients with dementia, patients for whom palliative care was not an important treatment aim, and patients for whom their GP had not provided palliative care.ConclusionThe prevalence of end-of-life discussions varied across the four countries. In all countries, training priorities should include the identification and discussion of spiritual and social problems and early end-of-life discussions with older patients, those with cognitive decline if possible, and those with non-malignant diseases.     

Advance directives: Portuguese palliative care professionals' views

Advance directives are a controversial subject in Portugal at present, particularly among health professionals. Although some health professionals consider them to be important tools that are helpful in making proper decisions and promoting patient autonomy, others think that they may interfere with the human and relational dimension of care. It is therefore timely to investigate health professionals' views of advance directives in more detail. This study aimed to identify and reflect on Portuguese palliative care professionals' perspectives of advanced directives and their relevance to end-of-life decision making. A qualitative exploratory methodology was adopted in which interviews were conducted with two physicians, six nurses, two psychologists, and one social worker from four palliative care teams based across Portugal. The findings emphasize the relevance of advance directives to ethical decision-making processes in palliative care. However, debates are needed regarding whether advance directives should be legally binding.     

Talking about end-of-life care: Perspectives of nursing home residents

The purpose of the paper is to describe how residents express preferences for end-of-life (EOL) care. For this qualitative study, we conducted semi-structured interviews and completed conventional content analysis to describe how residents’ expressed their preferences for care at the end of life. Sixteen residents from four nursing homes (NH) in southeastern Pennsylvania participated in this study. Residents were on average 88 years old, primarily non White, and widowed. Three key domains emerged from the analyses: Preferences for Today, Anticipating the End of My Life, and Preferences for Final Days. Residents linked their everyday living and EOL preferences by using ‘if and then’ logic to convey anticipation and readiness related to EOL. These findings suggest new strategies to start discussions of EOL care preferences with NH residents.     

End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied

Adults with congenital heart disease represent a growing patient population. Notwithstanding dramatic improvements in survival and life expectancy over recent decades, many of these patients remain at risk of premature death from progressive heart disease and would benefit from the principles of palliative and end-of-life care. Data on end-of-life care in this patient group are, however, lacking. We report a retrospective study of 48 patients with congenital heart disease who died while admitted to our hospital (mean age at death 37 ± 14 years). We describe circumstances of death, end-of-life discussions, and the provision of end-of-life care. The majority of patients had complex congenital heart disease and were considered to be in the end stage of their disease. Despite this, only a minority of patients had documented end-of-life discussions prior to their terminal admission and most received continuing aggressive medical treatment up to their demise. Advanced palliative and end-of-life care strategies should be developed for and provided to this group of patients, with the dual aims of reduction of unwarranted therapies and enhancement of the quality of death and dying.     

End-of-life care for older adults with dementia living in group homes in Japan

Aim:  The aim of this study was to elucidate the components of end-of-life care provided to older adults with dementia who live in group homes (GHs) in Japan.
Introduction:  The number of GHs in Japan is rapidly increasing. Although GHs were originally not established to care for elderly people with advanced-stage dementia, many residents remain in the GH even after their stage of dementia advances; thus, end-of-life care is required.
Methods:  Interviews were conducted with seven GH administrators on their experience in providing end-of-life care to their residents. The constant comparative approach was used for data collection and analysis.
Findings:  Four themes emerged as essential components of end-of-life care in the GH setting: (i) maintaining a familiar lifestyle; (ii) minimizing physical and mental discomfort; (iii) proactively utilizing desirable medical care; and (iv) collaborating with family members.
Conclusion:  The combination of the four components seems to be a unique characteristic of end-of-life care in GHs in Japan. These findings may be used to establish a framework for end-of-life care at GHs.     

Anticipating emotion: a qualitative study of advance care planning in the community setting

Advance care planning at the end of life is high on the political agenda across the UK. The aim is to deliver patient-centred care for all patients, whenever possible in their preferred place of care. It is widely acknowledged that discussions about the end of life are sensitive and often difficult for health professionals, particularly those in the community setting. The aim of this qualitative study was to determine the factors that assist or hinder the primary care health professionals having these discussions. The sample included one GP and one district nurse (DN) from each of three GP practices. Semi-structured interviews were conducted with the participants, and the data was analysed using a thematic approach. The findings clearly depict two of the challenges faced by the GPs and DNs in the community: emotional labour, and balancing patients' and families' expectations about care provision in the community with the limited resources available. This study contributes to the knowledge base of advance care planning by providing insight into the experiences of the GPs and DNs who care for patients at the end of life. Further research is required to more fully understand the emotional impact on the health professionals having these sensitive discussions.     

Nurses' responses to expert patients: the rhetoric and reality of self-management in long-term conditions: a grounded theory study

BACKGROUND: Against the backdrop in the western world of increasing prevalence of chronic disease, active and informed patients and a policy emphasis on self-management, this English study explored health professionals' responses to expert patients. OBJECTIVES: To: DESIGN: A grounded theory approach was utilised with two concurrent data strands. SETTING: A relatively affluent English county including community, primary and secondary care settings. PARTICIPANTS: Via purposeful and theoretical sampling 100 health professionals (nurses, doctors, physiotherapists) and 100 adults affected by chronic disease participated. METHODS: Focus groups, interviews and observation. RESULTS: Nurses were found to be most anxious about expert patients when compared to other professionals, which appeared to be linked with a lack of professional confidence and unfounded fears regarding litigation. However, nurse specialists often provided a negative case for this. As a whole, nurses were most able to meet the emotional needs of patients, but apart from nurse specialists did not articulate this as a skill. CONCLUSION: Apart from nurse specialists the majority of nurses appeared limited in appropriately facilitating self-management. It is suggested that this is linked to an ongoing nursing culture of patient as passive, an over-emphasis on empirical knowledge and a feeling of vulnerability on the nurses' part towards expert patients. The findings also indicate a rhetoric rather than reality of autonomous nursing roles within the chronic disease management agenda.