Facing epistemic and complex uncertainty in serious illness: The role of mindfulness and shared mind

BackgroundEpistemic uncertainty refers to situations in which available evidence is insufficient or unreliable, often accompanied by complexity due to novel contexts, multifactorial causation, and emerging options (the “unknowable unknown”). It stands in contrast to aleatory uncertainty where probabilities are known, and potential benefits and harms can be calculated and presented graphically (the “knowable unknown”).DiscussionEpistemic uncertainty is common, and encompasses uncertainty about the nature of the illness, whom to entrust with one’s care, and one’s ability to adapt and cope. Communication about the “unknowable unknown” occurs infrequently and ineffectively, and there is little research on improving communication in the face of epistemic and complex uncertainty. Terror Management Theory (TMT) predicts that in encountering serious illness, people engage in “worldview defense” – suppressing death-related thoughts, affiliating with like-minded others, and developing cognitive rigidity and intolerance of information that challenges their worldview. Mindfulness is associated with diminished defensive worldview reactions and cognitive rigidity, and greater tolerance of ambiguity. Shared mind encompasses shared understanding and affective attunement.ConclusionFor clinicians and seriously ill patients facing epistemic uncertainty, psychologically-informed interventions that promote mindfulness and shared mind offer promise in promoting open discussions regarding prognostic uncertainty, advance care planning, and treatment decision-making.     

Addressing possible problems with patients’ expectations,plans and decisions for the future: One strategy used by experienced clinicians in advance care planning conversations

Objective

Giving terminally ill people opportunities to participate in advance care planning involves tensions between: endorsing and supporting patients’ expectations, plans and decisions, and addressing how realistic these are. The latter risks exerting undue pressure to change plans; undermining autonomy; jeopardising therapeutic relationships. Our objective is to describe how experienced hospice doctors raise potential/actual problems with patients’ expectations, plans or decisions.

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

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

Toward a basic science of communication in serious illness

High-quality communication can mitigate suffering during serious illness. Innovations in theory and technology present the opportunity to advance serious illness communication research, moving beyond inquiry that links broad communication constructs to health outcomes toward operationalizing and understanding the impact of discrete communication functions on human experience. Given the high stakes of communication during serious illness, we see a critical need to develop a basic science approach to serious illness communication research. Such an approach seeks to link “what actually happens during a conversation” – the lexical and non-lexical communication content elements, as well as contextual factors – with the emotional and cognitive experiences of patients, caregivers, and clinicians. This paper defines and justifies a basic science approach to serious illness communication research and outlines investigative and methodological opportunities in this area. A systematic understanding of the building blocks of serious illness communication can help identify evidence-informed communication strategies that promote positive patient outcomes, shape more targeted communication skills training for clinicians, and lead to more tailored and meaningful serious illness care.     

Palliative cancer care ethics: principles and challenges in the Indian setting

Palliative cancer treatment is a system of care that seeks to relieve suffering in patients with progressive cancer. Given the intractable symptoms with which certain malignancies manifest, palliative care offers a practical approach towards improving the patient's quality of life. However, there are an array of ethical issues associated with this treatment strategy such as particular methods of pain relief, a reliable assessment of suffering, autonomy, and multi-specialist care. While these principles are important to increase and improve the network of palliative care, the resource-poor Indian environments present numerous barriers for these principles to be practically applied. As the infrastructure of comprehensive cancer centers develop, paralleled with an increase in training of palliative care professionals, significant improvements need to be made in order to elevate the status of palliative cancer care in India.     

Truth-telling at the end of life: a pilot study on the perspective of patients and professional caregivers

OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory. RESULTS: There was considerable variability in the preferences of patients regarding when and how they wanted to be informed of their diagnosis, prognosis, expected disease course and end-of-life decisions. Major ambivalence was observed regarding the degree to which patients wanted to hear 'the whole truth'. Patients and caregivers agreed that truth-telling should be a 'dosed and gradual' process. Several barriers to more complete and timely truth-telling were identified. CONCLUSION: The preferences of both patients and caregivers for step-by-step--and hence slow and limited--information prevents terminal patients from reaching the level of information needed for informed end-of-life decision-making. PRACTICE IMPLICATIONS: The preference of patients and caregivers to 'dose' the truth may entail some risks, such as a 'Catch 22' situation in which both patients and caregivers wait for a signal from each other before starting a dialogue about impending death.     

Pattern of Palliative Care, Pain Management and Referral Trends in Patients Receiving Radiotherapy at a Tertiary Cancer Center

Background:

Pain is a common primary symptom of advanced cancer and metastatic disease, occurring in 50-75% of all patients. Although palliative care and pain management are essential components in oncology practice, studies show that these areas are often inadequately addressed.

Materials and Methods:

We randomly selected 152 patients receiving palliative radiotherapy (PRT) from October 2006 to August 2008, excluding metastatic bone lesions. Patients'' records were studied retrospectively.

Results:

A median follow-up of 21 weeks was available for 119 males and 33 females with a median age of 55 years. Maximum (60%) patients were of head and neck cancers followed by esophagus (14%), lung (10%) and others. Dysphagia, growth/ulcer and pain were the chief indications for PRT. Pain was present in 93 (61%) cases out of which, 56 (60%) were referred to pain clinic. All except one consulted pain clinic with a median pain score of 8 (0-10 point scale). Fifty-three of these 56 patients (96%) received opioid-based treatment with adequate pain relief in 33% cases and loss of follow-up in 40% cases. Only five (3%) cases were referred to a hospice. Twenty-two (14%) cases were considered for radical treatment following excellent response to PRT.

Conclusion:

In this selective sample, the standard of analgesic treatment was found to be satisfactory. However, there is a lot of scope for improvement regarding referral to pain clinic and later to the hospice. Patients'' follow-up needs to be improved along with future studies evaluating those patients who were considered for further RT till radical dose. Programs to change the patients'' attitude towards palliative care, physicians'' (residents'') training to improve communication skills, and institutional policies may be promising strategies.     

Communication with Relatives and Collusion in Palliative Care: A Cross-Cultural Perspective

Handling collusion among patients and family members is one of the biggest challenges that palliative care professionals face across cultures. Communication with patients and relatives can be complex particularly in filial cultures where families play an important role in illness management and treatment decision-making. Collusion comes in different forms and intensity and is often not absolute. Some illness-related issues may be discussed with the patient, whereas others are left unspoken. Particularly in palliative care, the transition from curative to palliative treatment and discussion of death and dying are often topics involving collusion. Communication patterns may also be influenced by age, gender, age, and family role. This paper outlines different types of collusion and how collusion manifests in Indian and Western cultures. In addition, promising avenues for future research are presented.     

Characteristics of uncertainty in advanced pediatric cancer conversations

ObjectivesTo describe the initiation, response, and content of communication about uncertainty in advanced pediatric cancer.MethodsQualitative analysis of 35 audio-recorded outpatient consultations between physicians and families of children whose cancer recently progressed. We defined uncertainty as “future-oriented lack of clarity in which answers are unknown to all participants involved in the conversation.”ResultsConversations contained a median of 14 (interquartile range 8.5–19) uncertainty statements related to 6 topics: appropriateness of treatments, acute toxicities and morbidities, prognosis or response to treatment, diagnostic uncertainty, logistical uncertainty, and long-term toxicities. Physicians initiated 63 % of statements (303/489), parents initiated 33 % (165/489), and children initiated 2% (10/489). We identified 14 unique responses to uncertainty: 11 responses provided space for discussion, 3 responses reduced space. Physicians most commonly responded by providing additional information (38 %, 361/947). Parents most often responded with continuing statements, such as “um” or “yeah” (50 %, 313/622). Children seldom responded (<1%, 12/1697).ConclusionPhysicians initiated most uncertainty discussions, and their responses often provided space for further discussion. Children were seldom involved in these conversations.Practice implicationsClinicians should consider maintaining open conversations about uncertainties in advanced pediatric cancer, and consider engaging children in these discussions.     

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).

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.     

Asking about self-harm and suicide in primary care: Moral and practical dimensions

ObjectiveSelf-harm and suicide are important topics to discuss with people experiencing mental health conditions. This study explores how such discussions unfold in practice, and how their moral and practical repercussions manifest for patients and doctors.MethodsConversation analysis (CA) was used to examine 20 recorded examples of doctors’ questions about self-harm and suicide and their ensuing discussions with patients.ResultsA tendency to frame questions about self-harm towards a ‘no’ response, to amalgamate questions around self-harm and suicide, and to limit dialogue around the protective factors offered by family and friends restricted discussion of patients’ experiences and concerns. Closed questions about thoughts and actions in the context of risk assessment resulted in missed opportunities to validate distressing thoughts. Patients responding affirmatively often did so in a way that distanced themselves from the negative stigma associated with suicide.ConclusionThe wording of questions, along with negative stigma, can make it difficult for patients to talk about self-harm.Practice implicationsDiscussions could be improved by asking about self-harm and suicide separately, encouraging discussion when responses are ambiguous and validating distressing thoughts. Negative stigma could be countered by exploring patients’ positive reasons for wanting to stay alive.     

A cup of magic

This reflective piece tells the story of an impactful patient interaction that shaped the practice of a medical student. The essay focuses on the power of shared time and the development of meaningful relationships as a form of adjunctive therapy for patients, regardless of diagnosis or prognosis. Fostering an appreciation for the present moment and savoring glimpses of human interaction are other themes that are touched upon in this piece.     

Spiritual Needs of Cancer Patients: A Qualitative Study

Introduction:

Diagnosis of cancer can cause huge spiritual crisis in a person and affect different aspects of life. At this stage, patients have certain spiritual needs.

Aim:

This study was conducted to explain spiritual needs of cancer patients in Iran.

Materials and Methods:

In this qualitative study, 18 cancer patients, referred to the Cancer Institute of Imam Khomeini Hospital in Tehran were selected using purposive sampling method, and their spiritual needs emerged out of conventional content analysis of interviews conducted with them.

Results:

From 1850 initial codes, 4 themes (connection, peace, meaning and purpose, and transcendence) were identified that contained categories of social support, normal behavior, inner peace, seeking forgiveness, hope, acceptance of reality, seeking meaning, ending well, change of life meaning, strengthening spiritual belief, communication with God, and prayer.

Conclusions:

Spiritual needs of cancer patients should be recognized, realized, and considered in care of patients by the medical team. An all-out support of health system policy makers to meet patients’ spiritual needs is particularly important.     

Promoting shared decision making in advanced cancer: Development and piloting of a patient communication aid

Objective

To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.

Nonpain Symptoms of New and Follow-up Cancer Patients Attending a Palliative Care Outpatient Clinic in Saudi Arabia

Background:

Epidemiology of cancer-related nonpain symptoms receives less attention in literature as compared with cancer pain.

Objective:

This paper aims at exploring the prevalence and severity of nonpain symptoms in cancer patients attending a palliative care (PC) outpatient clinic.

Materials and Methods:

Over a 5 months period, consecutive adult cancer patients attending PC outpatient clinic at a tertiary hospital were evaluated for the presence and severity of 10 nonpain symptoms. Patients were grouped to new or follow-up cases and were also grouped according to performance status and cancer type. Prevalence and severity of symptoms were compared between groups using t test or analysis of variance as appropriate.

Results:

Fifty-one males and 73 females were interviewed. The most common cancer is female breast (27.4%) followed by head and neck (15.3%). Majority of patients (67%) were new to PC clinic. Patients had 5.1 nonpain symptoms on average, with most common symptoms being tiredness (79.8%), loss of appetite (71.8%), dry mouth (69.4%), anxiety (60.5%), and depression (50.8%). The least common symptoms were confusion and nausea (22.6% each). The median scores of severity were highest for tiredness, loss of appetite, dry mouth, and insomnia (5 points each). Symptoms were fewer among patients with good performance status (P = 0.002), whereas age, gender, cancer type, and encounter type were not associated with difference in symptom prevalence. Younger patients, females and those with poor performance status have shown a tendency toward higher severity scores for several symptoms.

Conclusion:

The significant prevalence and severity of nonpain symptoms among new and follow-up cancer patients seen in a PC outpatient clinic emphasizes the need for comprehensive assessment and routinely audited symptom management plans.     

Mechanism-based Classification and Physical Therapy Management of Persons with Cancer Pain: A Prospective Case Series

Context:

Mechanism-based classification (MBC) was established with current evidence and physical therapy (PT) management methods for both cancer and for noncancer pain.

Aims:

This study aims to describe the efficacy of MBC-based PT in persons with primary complaints of cancer pain.

Settings and Design:

A prospective case series of patients who attended the physiotherapy department of a multispecialty university-affiliated teaching hospital.

Material and Methods:

A total of 24 adults (18 female, 6 male) aged 47.5 ± 10.6 years, with primary diagnosis of heterogeneous group of cancer, chief complaints of chronic disabling pain were included in the study on their consent for participation The patients were evaluated and classified on the basis of five predominant mechanisms for pain. Physical therapy interventions were recommended based on mechanisms identified and home program was prescribed with a patient log to ensure compliance. Treatments were given in five consecutive weekly sessions for five weeks each of 30 min duration.

Statistical Analysis Used:

Pre–post comparisons for pain severity (PS) and pain interference (PI) subscales of Brief pain inventory-Cancer pain (BPI-CP) and, European organization for research and treatment in cancer-quality of life questionnaire (EORTC-QLQ-C30) were done using Wilcoxon signed-rank test at 95% confidence interval using SPSS for Windows version 16.0 (SPSS Inc, Chicago, IL).

Results:

There were statistically significant (P < 0.05) reduction in pain severity, pain interference and total BPI-CP scores, and the EORTC-QLQ-C30.

Conclusion:

MBC-PT was effective for improving BPI-CP and EORTC-QLQ-C30 scores in people with cancer pain.