Background: With an aging population, and most deaths due to a nonmalignant cause, there is urgency to review the nature of end-of-life care (EoLC) to minimize gaps in service provision. Early introduction of EoLC benefits patient and carers, so identification of those at risk of dying 6 to 12 months before death is highly desirable.
Objective: To identify the most predictive patient characteristics of a risk of death within 6 to 12 months as a precursor to developing a user-friendly primary care screening tool.
Design: Retrospective case–control study.
Setting/Subjects: Australian general practice. Cases were patients aged =70 years who died in the previous 5 years. Controls were matched for age and gender. Exclusion criteria were: no available practice records for the 18 months before death (cases) and data collection (controls); no corroborated evidence of death.
Measurements: Supportive and Palliative Care Indicators Tool (SPICT) indicators of deterioration in medical records.
Results: There were 215 deaths and 267 controls. The most predictive patient characteristics of a risk of death within 6 to 12 months are: deteriorating performance status, weight loss, persistent symptoms, request for palliative care or treatment withdrawal, impaired activities of daily living, falls ± fractured hip, neurological deterioration, advanced lung disease, and estimated glomerular filtration rate <30 mL/min/1.73 m2 with deteriorating health. Our predictive model has a sensitivity and specificity of 67% and 87%, respectively, with a predictive accuracy of 78%.
Conclusions: This model predicts risk of death within 6 to 12 months with acceptable reliability in a general practice setting and has the potential to be incorporated into clinical practice and electronic records.
Trauma is widespread, and its symptoms can adversely impact wellbeing at end of life, a time when hospice seeks to maximize quality of life. This article reviews research on trauma at end of life, provides an overview of trauma-informed principles, and explores possibilities for applying trauma-informed care through an illustrative case study of a patient at end of life. The case discussion applies findings from the literature using Feldman's Stepwise Psychosocial Palliative Care model as a roadmap. As shown in the case study, trauma-related symptoms may complicate care, making it an important subject of clinical attention for interdisciplinary hospice team members. As part of this team, social workers are particularly well suited to provide more targeted interventions where indicated, though all members of the team should take a trauma-informed approach. Lastly, this article reflects on the need for organizations to take a systems-level approach when implementing trauma-informed care and suggests implications for practice through a universal approach to trauma and the need for trauma-specific assessments and interventions at end-of-life, along with areas for future research.
BACKGROUND: Local radiation therapy (RT) can provide pain relief and reduce bleeding resulting from pleural or peritoneal dissemination of primary tumors. However, the optimal RT exposure dose for such tumors is unclear and the response rate is unknown. In this study, we examined the effectiveness of palliative RT for pleural or peritoneal disseminated tumors to determine the optimal dose in these patients.
METHODS: The data of 22 patients with pleural- or peritoneal-disseminated tumors who were treated with local RT at our institution between 2011 and 2019 were retrospectively reviewed.
RESULTS: Among these patients, 9 (40.9%) had pleural tumors, 13 (59.1%) had peritoneal tumors and 2 had tumors in the peritoneum and umbilicus. The most common primary tumors were lung (22.8%) and pancreatic cancer (18.2%). RT was mainly administered for pain alleviation (72.7%). Three patients (13.6%) received RT for hemostasis. Thirteen patients (59.1%) received a regimen of 30 Gy/10 fractions (fr), with the total dosage for all patients ranging from 27 to 56 Gy. No grade 2 or higher RT-related adverse events occurred. Three and four patients obtained complete and partial responses, respectively. The timing of the measurement of response to pain relief ranged from 0 to 232 (median, 21) days upon completion of RT. Overall response to pain relief occurred in nine of 16 patients (56.3%) with pain before RT. Hemostasis was confirmed in 2 of the 3 patients (66.7%) with bleeding before RT. Twelve of 20 (60%) patients with symptoms before RT responded to RT. Disease-specific survival (DSS) time after RT ranged from 1 to 656 (median, 106) days.
CONCLUSIONS: Prompt palliative administration of RT to patients with advanced disease to alleviate pain from disseminated tumors may achieve therapeutic efficacy.
A qualitative case-series review was conducted in a nurse-led home-based hospice service to evaluate the impact of specialist psychiatric consultations on patients’ well-being and management. The impact on patients’ care was assessed via analysis of case notes and psychiatrist reports, and interviews with both hospice nurses and the psychiatrist. 18 visits were made by the psychiatrist for 16 patients over a period of 12 months. Nine patients were referred for mood disorders, four for severe agitation, one for review of schizophrenia, one for dementia assessment, and one for possible patient abuse. Three patients already had psychiatric conditions prior to admission; long-standing anxiety, depression on a background of dementia, and chronic schizophrenia. Analysis of medical documentation revealed nine (half) of those visits led to positive psychological outcomes while the remainder were equivocal. Six positive cases involved the management of mood disorders, two related to the treatment of behavioural issues, while the last was for titration of medication. Almost all nurses gave positive feedback, expressing greater confidence and comfort in managing difficult mental health symptoms or family issues. However, short patient prognoses and limited psychiatrist visits prevented optimisation of interventions suggested. Overall, psychiatric consultations can improve patient well-being and enhance existing care.
BACKGROUND: End-of-life is a unique and multidimensional experience, and physical complaints can reveal other areas of distress.
METHOD: A case report of a woman with terminal cancer with painful and deforming skin striae cared by a multidisciplinary team.
RESULTS: After initially treating her physical pain, other end-of-life psychosocial, spiritual, and existential aspects could be addressed.
SIGNIFICANCE OF RESULTS: Physical distress can unveil other essential areas of end-of-life experience when multidisciplinary teams caring for the terminally ill patients use holistic approaches.
NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.
BACKGROUND: Hospital palliative care is an essential part of the COVID-19 response, but relevant data are lacking. The recent literature underscores the need to implement protocols for symptom control and the training of non-specialists by palliative care teams.
AIM: The aim of the study was to describe a palliative care unit's consultation and assistance intervention at the request of an Infectious Diseases Unit during the COVID-19 pandemic, determining what changes needed to be made in delivering palliative care.
DESIGN: This is a single holistic case study design using data triangulation, for example, audio recordings of team meetings and field notes.
SETTING/PARTICIPANTS: This study was conducted in the Palliative Care Unit of the AUSL-IRCCS hospital of Reggio Emilia, which has no designated beds, consulting with the Infectious Diseases Unit of the same hospital.
RESULTS: A total of 9 physicians and 22 nurses of the Infectious Diseases Unit and two physicians of the Palliative Care Unit participated in the study.Our Palliative Care Unit developed a feasible 18-day multicomponent consultation intervention. Three macro themes were identified: (1) new answers to new needs, (2) symptom relief and decision-making process, and (3) educational and training issues.
CONCLUSION: From the perspective of palliative care, some changes in usual care needed to be made. These included breaking bad news, patients' use of communication devices, the limited time available for the delivery of care, managing death necessarily only inside the hospital, and relationships with families.
Background: Although there is growing evidence that close reading of literature and reflective writing can improve providers' appreciation of the patient experience, foster physician development, and combat burnout, there has been less work on the experience of reading literature with patients, and even less literature about its effect on those facing serious or life-threatening illness. In addition, longer form reading may be unsuitable for some patient populations, given high burden of fatigue and possible contribution of delirium. Time pressure may also preclude discussion by a practitioner working in a busy clinical context.
Hypothesis: We feel the condensed medium of poetry presents a natural opportunity to engage patients with the medical humanities, helping them to articulate difficult or joyful experiences, and/or serving as necessary diversion when facing serious illness.
Project Description: Poetry for patients-a project developed through collaboration between Northwestern Memorial Hospital, The Jesse Brown VA, and the Poetry Foundation in Chicago, an independent literary organization committed to a vigorous presence for poetry in our culture-has developed three short collections of poems, and an accompanying discussion guides for use specifically with patients and families. Hereunder, we present three case examples of a short (10-30 minutes) reading session with patients demonstrating that it is feasible to incorporate reading poetry with patients facing serious illness. Potential therapeutic value includes helping patients to articulate pain and joy, giving patients a vehicle to recapture their creative voice, and altering the power dynamics inherit to the provider-patient relationship. We have also noted enhanced life review, often on themes otherwise difficult to access. In turn, these readings have deepened our ability to see out patients as creative, intellectual, and larger than their medical illness.
Staff reported paranormal experiences in connection with the outpatient Medical Assistance in Dying (MAiD) room at the hospital. This case study reports on staff experiences and illustrates how the Ethics team’s role expanded to deal with this novel situation by facilitating an interdisciplinary response.
The Voluntary Assisted Dying Act 2017 (Vic) came into effect in Victoria on 19 June 2019. We present the case of an inpatient death under the voluntary assisted dying Act in our health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement.
OBJECTIVE: The COVID-19 pandemic is a care crisis of unknown duration which has seemingly not yet reached its peak in many countries. A significant number of elderly and frail people and those with underlying serious illness will continue to develop severe forms of the COVID-19 infection. Most of them are not eligible for intensive care treatment but can still expect palliative care - in many cases provided by a Hospital Palliative Care Team (HPCT). Several teams have already gained experience in caring for these patients and their families, others are preparing for it.
METHOD: We report on a COVID-19 patient with pre-existing acute myeloid leukemia who was looked after by a HPCT until death. We discuss the challenges and difficulties while caring for COVID-19-positive palliative patients in a non-ICU setting.
RESULTS: Hospitalization of the patient in an isolation ward caused an enormous burden for the dying patient and his family. Symptom control was particularly difficult because of rapid deteriorating dyspnea and the scarce presence of medical staff in the patient's room.
SIGNIFICANCE OF RESULTS: COVID-19 patients who are not eligible for ICU treatment may have a particularly high need for palliative care. Since beds in specialist palliative care units are limited, the HPCT should be prepared to care for these patients. They may offer support in decision-making, optimize symptom control, and provide psychosocial care for patients and their families. Visiting restrictions aimed to protect the general public must be weighted against the patient's and family's suffering.
BACKGROUND: Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.
AIM: To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.
METHOD: A case study based on an anthropological field study among patients with advanced cancer in Denmark.
ETHICAL CONSIDERATIONS: Followed the principles of the Helsinki Declaration.
FINDINGS: Two cases illustrated situations where nurses refused patient involvement in their own case.
DISCUSSION: Focus on two ethical issues, namely 'including patients' experiences in palliative nursing care' and 'relational distribution of power and knowledge', inspired primarily by Hannah Arendt's concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients' palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned 'thoughtlessness' of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients' invitations to involve them in their own case.
CONCLUSION: The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that 'thoughtlessness' appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses' ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare.
AIM: To consider the possibility of consequences beyond the alleviation of perceived individual suffering, for families left behind, communities and society as a whole should the End of Life Choice Act gain public support in the September 2020 referendum in New Zealand.
METHOD: This study used the Yin case study approach to undertake a single semi-structured in-depth interview with a participant who self-identified as having first-hand experience of assisted dying from a relative's perspective (in a country where this is legal). Thematic analysis was used to identify themes and trends from the interview transcript.
RESULTS: Three key themes emerged from the interview: the potential for assisted dying becoming an expectation for others to pursue when unwell and possibly facing a life-threatening illness; the notion of stigma being associated with the individual using assisted dying legislation and the family left behind; and that there may be the potential for such legislation to produce a contagion effect.
CONCLUSION: The introduction of assisted dying legislation into New Zealand culture provides a potential hotspot for family, community and social discord that may not be easily remedied. Further study in New Zealand is required to investigate whether a contagion effect of assisted dying is possible, and how as a society, we negotiate what could become a conflicted pathway potentially complicated by prejudice, judgement and stigma.
The unprecedented coronavirus disease 2019 (COVID-19) pandemic has challenged health care systems in different ways. In the United Kingdom, various subspecialties are deployed to the wards to help medical workforce in the frontlines, with dermatologists helping with general medical wards and on-calls. We present a case of COVID-19–related urticaria manifesting in a palliative setting and responding well to systemic antihistamine. This pandemic has highlighted a new subspecialty that should be explored and researched—palliative dermatology—bridging elements of dermatology with the concepts of palliative medicine. As dermatologists, we should be in the position to help with the last stages of a patient’s journey.
Objective: To present our center’s experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit.
Design: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families’ wishes.
Interventions: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes.
Conclusions: Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequate hydration will often be part of symptom management but may be associated with several practical and ethical challenges. Subcutaneous fluid administration in children's palliative care is relatively uncommon, so there is a lack of evidence on the topic. This article demonstrates that it is feasible to use subcutaneous fluid therapy in the children's hospice setting to address patients' hydration needs and manage their symptoms. It presents a case study of a child who received subcutaneous fluids in a children's hospice for dehydration and myoclonus. It uses the case study to discuss subcutaneous fluid therapy in the children's palliative care setting, including its indications and contraindications, administration, complications and important factors to consider.
We present a case of a 64-year-old woman with stage 1 breast cancer. She underwent a modified radical mastectomy, followed by chemotherapy. She reported physical and psychosocial suffering due to her disease and treatment. Four weekly sessions of guided 30-min mindful breathing were delivered by the palliative care team to ease her suffering. The patient reported feelings of calmness, peace and relaxation after each session, with decrease in suffering, negative emotions and physical discomfort. This is the first report on the use of guided 30-min mindful breathing in palliating suffering of a patient with cancer.