Refugees are a highly vulnerable marginalized population with unique medical and psychosocial needs. Unfortunately, the Interim Federal Health Program (IFHP) in Canada partially covers the medical needs of refugee claimants but does not include hospice or home-based palliative care. This report describes the case of a refugee claimant cancer patient who was admitted to an inpatient tertiary cancer center medical oncology ward in Ontario, Canada, for [about] 11 months due to insufficient community-based palliative care resources available for patients covered by the IFHP. This case report highlights the differences in palliative care coverage between the provincial health care coverage, Ontario Health Insurance Plan, and federal health care coverage for refugees, IFHP, from a practical point of view, how this can affect the palliative care available for patients and their families, and the impact on the Canadian health care system.
A 55-year-old man undergoes emergent exploratory laparotomy and splenectomy following a motorcycle collision. Following surgery, he is found to have a traumatic brain injury requiring decompressive craniectomy and intracranial pressure monitoring. The patient then continues to have complications throughout his hospital course. Using the American College of Surgeons Trauma Quality Improvement Program guidelines, the surgical team has early and ongoing primary palliative care discussions to foster communication and determine goals of care for the patient. As the patient deteriorates, the surgical team continues meeting with the patient’s surrogate decision makers to discuss the best case and worst case scenarios regarding the patient’s prognosis and expected quality of life.
Complex wounds are common complications in hospice and palliative medicine (HPM), especially in patients with aggressive malignancies. Myiasis, or an infestation of maggots, is a rare but significant complication of such wounds. While uncommon in the United States, many HPM patients have multiple risk factors and comorbidities that increase their vulnerability to this condition. Currently, there are no standard diagnostic or treatment guidelines for wound myiasis. In addition, common management strategies may not be easily accessible in HPM settings. We present this case of a patient with malignant squamous cell carcinoma of the neck complicated by myiasis while in hospice, and our experience diagnosing and managing her infestation. We also reflect on special considerations for HPM patients when addressing the physical and psychological symptoms of wound myiasis.
BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
This article presents the case of a mother of young children who has terminal stage IV cancer with whom providers had not discussed goals of care and prognostication. Communications about prognostication and goals of care are commonly initiated by physicians. Adolescents and young and middle-age adults with complex chronic or terminal illness often are not provided with timely, clear, complete information or palliative care support. Early palliative care for chronically ill patients facilitates discussions of prognostication and goals of care, in addition to providing symptom management. Such discussions do not diminish hope but rather allow patients to adjust hope to attain an optimal quality of life. Nurses can become active, confident advocates for patients with terminal illness of any age, and they are well positioned to assess patients and engage in goals of care and end-of-life conversations. It is especially important that palliative care nurses promote and maintain these early and comprehensive discussions during the COVID-19 pandemic because this population is at a high risk of complications from the coronavirus.
An 87-year-old man with nonischemic cardiomyopathy, an implantable cardioverter defibrillator (ICD), and stage IV renal cell carcinoma presented to the emergency department with fever. On arrival, his temperature was 103 °F, his heart rate 120 beats per minute, and his blood pressure 80/56 mm Hg. His laboratory results were notable for a white blood cell count of 16 000/µL (to convert to ×109/L, multiply by 0.001) and urinalysis showing leukocyte esterase, nitrites, and bacteria. His condition initially improved with volume resuscitation and treatment with ceftriaxone and was admitted with sepsis presumed secondary to a urinary source. On admission, the patient reported that he had previously signed an out-of-hospital do-not-resuscitate (DNR) order and that he wanted to continue his DNR status while hospitalized.
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.
OP is a 59 year old female who presents to the emergency room in respiratory distress. Her COVID-19 polymerase chain reaction test was positive, as was her SARS-CoV-2 IgM antibody screen. As she was hypoxic (room air oxygen saturation: 89%), she was admitted for further treatment.
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.
Dependence on a health care system due to a serious illness often unsettles a perceived sense of safety and predictability. Beyond the individual's thoughts and feelings, illness also disrupts relationships, social and spiritual supports, financial stability, and trust in the health care systems to deliver quality and equitable care. Psychological, social, and cultural factors weave within the patient's developmental stage, family structure, financial security, and spirituality. As such, the ability to attend to these factors efficiently, effectively, and compassionately is a key component of the palliative care provided by all clinicians who care for the seriously ill. This Fast Fact offers clinical guidance in performing a psychosocial assessment for seriously ill patients.
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.