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.
Background: Recurrent ascites is a late manifestation of several diseases, including cancer, cirrhosis, and heart failure, invariably associated with very poor prognosis. Hence, every effort must be aimed at reducing discomfort and side effects of its management.
Objective: To evaluate if peritoneal catheters (PCs) are a viable alternative treatment approach in palliative patients who fail medical management of ascites.
Design: Case study.
Results: We report the case of a terminal patient with cirrhosis and hepatocellular carcinoma who presented refractory ascites despite serial large-volume paracentesis. A Tenckhoff percutaneous catheter was inserted, allowing for ascites' control and with no complications noted.
Conclusions: PC placement was successful in controlling the patient's symptoms and ultimately improved comfort and well-being during the final stage of his life. This option should be assessed in selected patients to elevate palliative standards of care.
The current coronavirus disease 2019 (COVID-19) pandemic has put significant strain on all aspects of health care delivery, including palliative care services. Given the high mortality from this disease, particularly in the more vulnerable members of society, it is important to examine how best to deliver a high standard of end-of-life care during this crisis. This case series collected data from two acute hospitals examining the management of patients diagnosed with COVID-19 who subsequently died (n = 36) and compared this with national and local end-of-life audit data for all other deaths. Our results demonstrated a shorter dying phase (38.25 hours vs. 74 hours) and higher rates of syringe driver use (72% vs. 33% in local audits), although with similar average mediation doses. Of note was the significant heterogeneity in the phenotype of deterioration in the dying phase, two distinct patterns emerged, with one group demonstrating severe illness with a short interval between symptom onset and death and another group presenting with a more protracted deterioration. This brief report suggests a spectrum of mode of dying. Overall, the cohort reflects previously described experiences, with increased frailty (median Clinical Frailty Scale score of 5) and extensive comorbidity burden. This brief report provides clinicians with a contemporaneous overview of our experience, knowledge, and pattern recognition when caring for people with COVID-19 and highlights the value of proactive identification of patients and risk of deterioration and palliation.
To the Editor : A woman with a history of obesity, diabetes, cardiovascular disease, and end-stage renal disease was admitted to an overburdened New York hospital with respiratory distress due to coronavirus disease 2019 (COVID-19). At the time of admission, she was unable to speak for herself, and given restrictions on visitation, it took much effort to find her daughter who did not know the patient's medical wishes. Before COVID-19, the daughter had accompanied her wheelchair-bound mother to all of her appointments including visits with an endocrinologist, cardiologist, primary care doctor, and physical therapist in the preceding 3 months, as well as dialysis appointments three times a week. However, advance care planning (ACP) had never been discussed.
Background: Optimal pain management in the palliative care setting often requires multiple pharmacological interventions including novel and off-label therapies. Ketamine is an anesthetic agent with increasing evidence supporting its use for pain. Through N-methyl-d-aspartate antagonism and activity at opioid receptors, it is an adjuvant to traditional analgesics with the benefit of being opioid sparing. Ketamine has a wide safety profile with limited reports of overdose. Little is published on supratherpeutic dosing in the pain setting.
Objective: We report a case of a 41-year-old male with refractory nociceptive and neuropathic cancer-related pain. Conventional therapies were ineffective. Ketamine was initiated to reduce opioid burden and attenuate pain with good response. The patient received an iatrogenic overdose (10 times ordered dose) of the drug. Several self-limited physiologic and psychologic reactions were observed during subsequent monitoring.
Design: This is a study and analysis of a patient with refractory nociceptive and neuropathic pain syndrome treated with ketamine who sustained an iatrogenic overdose of ketamine.
Conclusions: Ketamine's use to treat pain is increasing along with its evidence of efficacy. Despite ketamine's wide safety profile, the medication is not without risk, especially in palliative care wherein patients are on multiple drugs with potentially severe interactions. Careful examination of the risks of overdose, especially of the various formulations of the drug, is needed.
Opioid addiction, if not well diagnosed and treated, can be a significant challenge for optimal pain management even in cancer patients. To date there is no definitive pharmacological standard of care for treating addiction, especially in this setting of patients. We present a clinical case series of three opioid-addicted advanced cancer patients, effectively treated with haloperidol, a well-known first-generation typical antipsychotic.
Background: Uncontrolled cancer pain is a significant problem in palliative medicine. Opioids are often first-line treatment that increase risks of analgesic tolerance and hyperalgesia. Topical ketamine with other adjuvant pain medications is an often-overlooked treatment, yet may be most effective in difficult-to-treat cancer pain.
Objective: We report a case series of hospice patients with uncontrolled cancer pain who were suboptimally treated with opioids and nerve blocks, whose symptoms responded to topical ketamine with other adjuvants. We review the pronociceptive properties of opioids and how topical multimodal treatment of cancer pain can be more effective than standard opioids, other topical adjuvant medications, and nerve blocks. We discuss the shortcomings of the World Health Organization (WHO) stepladder for the treatment of cancer pain and suggest an adjuvant treatment algorithm, directing physicians to appropriate adjuvant pain agents based on pain type and distinct receptor actions.
Design: This is a retrospective case series of patients who responded to topical multimodal pain treatment with implementation of findings into an addendum to the WHO stepladder.
Subjects: Subjects were from a case series of community-based hospice patients with previously uncontrolled cancer pain.
Measurement: Measurement was made by self-report of pain levels using the 10-point numeric pain rating scale.
Results: Patients' pain was controlled with topical adjuvant medications with return to previously lost function and prevention of otherwise escalating opioid dosing.
Conclusions: These patient cases reveal how ketamine-based topical treatment for cancer pain can be more effective than standard opioids, other topical adjuvant medications, and nerve blocks with no noted side effects and observed reduction in opioid consumption.
Background: Although decongestive physiotherapy combined with diuretics may be efficient in limb edemas, no such therapy has been described in the context of anasarca.
Case Description: A bedbound 62-year-old man with stage IV pancreatic cancer, presenting with progressing severe dyspnea at rest and anasarca, was admitted to the free-standing hospice 3 weeks after receiving nab-paclitaxel with gemcitabine. Two weeks before admission, oral loop and potassium-sparing diuretics were started for bilateral lower limb edema, which progressed to anasarca even though the drug dose was increased. Hypotension hindered further dose escalation of diuretics. Supportive multicomponent bandage compression on both legs with concurrent intravenous furosemide in hypersaline infusion was implemented with good clinical toleration. Afterward, the loop diuretic dose was increased, and supplemented with dexamethasone. A spectacular edema decrease and marked dyspnea improvement with 19 kg body weight reduction were observed within 7 days. Furosemide was switched to oral route and the patient was discharged needing only occasional assistance in daily living.
Conclusion: Compression bandaging with diuretic therapy may be considered even in advanced generalized edemas; however, further studies are needed to determine the adequate therapeutic regime.
BACKGROUND: Depressive disorders are common among cancer patients. Ketamine can quickly relieve depression, and its subcutaneous administration appears to be as effective as and probably safer than its standard intravenous administration. Herein, we report a case verifying the antidepressant effect of a subcutaneous esketamine formulation.
CASE PRESENTATION: A 65-year-old male with metastatic abdominal tumor reported sadness, weight loss, fatigue, hopelessness, insomnia, inattention, and reduced motivation. His scores on the visual analogical scale for pain and Montgomery-Asberg depression rating scale were 8/10 and 30/60, respectively.
POSSIBLE COURSES OF ACTION: Monoaminergic antidepressants are effective, but their response is slow for end-of-life care.
FORMULATION OF A PLAN: Esketamine was preferred because it possibly contributes to pain relief. It can repeatedly be infused intravenously, but was subcutaneously administered twice a week for safety reasons.
OUTCOME: The patient showed continuous mood improvement, achieving depression remission on day 7. Pain relief was observed but without stability. His vital signs remained stable, and he remained calm, without major complaints.
LESSONS FROM THE CASE: Repeated subcutaneous esketamine injections are possibly safe and effective in pain and depression relief in palliative care cancer patients.
VIEW ON RESEARCH PROBLEMS, OBJECTIVES, OR QUESTIONS GENERATED BY THE CASE: Placebo-controlled studies with similar cases are needed to establish efficacy and safety.
At 35, Mr. J. was dying of an invasive pelvic sarcoma and had a tolerance to opioids. Despite his pain, he wanted to be present with his family and friends. When his physician broached the possibility of palliative sedation, he said, “We aren’t there yet.”
The use of long-term and continuous intravenous inotropic support (CIIS) has increased over the past decade. Published evidence indicates that CIIS improves New York Heart Association functional class but does not impact survival. American College of Cardiology/American Heart Association (ACC/AHA) guidelines published in 2013 delineated indications for intravenous inotropic support. Long-term CIIS as palliative therapy (i.e., aim is symptomatic improvement in patients who are not appropriate for surgical therapies) in patients with ACC/AHA Stage D congestive heart failure (CHF) despite optimal medical treatment and device therapy was assigned a Class IIb recommendation (Level of Evidence B).
BACKGROUND: The significance of palliative care consultation in psychiatry is unclear.
ACTUAL CASE SERIES: Analysis of the introduction of palliative care consultation in a large psychiatric hospital.
POSSIBLE COURSES OF ACTION: Continue without offering, survey the need for or offer palliative care consultation, and analyse its introduction.
FORMULATION OF A PLAN: Palliative care consultation was established and details including patient age, department, diagnosis, main problem, solution and discharge were analysed during the first 2 years.
OUTCOME: Two consultations in the first year and 18 consultations in the second year were requested (18 geriatric, 2 addiction, 0 general, clinical social and forensic psychiatry) involving two domains: delirium associated with dementia or another condition (75%) and mental illness (e.g. alcoholic psycho-syndrome, psychosis, suicidal tendency, schizophrenia, depression) and cancer (25%). Recommendations of consultations were realized in 95%.
LESSONS FROM THE CASE SERIES: Implementation of palliative care consultation in psychiatry is one possible method of how to introduce palliative care in a field of medicine with lack of palliative care.
VIEW: Future research should focus on reasons for reservations about palliative care in psychiatry, include more patients with severe persistent mental illness and assess the value of palliative care consultation in resolving this problem.
A 72-year-old man was admitted to the hospital with fatigue. Colonoscopy revealed a 50 × 50 mm rectal tumor with bleeding. Based on close inspection, he was diagnosed with unresectable advanced rectal cancer with multiple liver metastases. Chemotherapy was administered as 10 cycles of bevacizumab + mFOLFOX6 and 7 cycles of bevacizumab + FOLFIRI. Nine months later, he presented with hematochezia and progression of anemia. It was difficult to stop the bleeding via endoscopy. He underwent radiation therapy (39 Gy in 13 fractions), and hemostasis was confirmed. Then, further chemotherapy was performed with 3 cycles of bevacizumab + FOLFIRI and 2 cycles of TAS102. However 14 months after the initial visit, he presented with right hypochondralgia and abdominal fullness due to the progression of multiple liver metastases. Palliative low-dose whole-liver radiation therapy (WLRT) (30 Gy in 10 fractions) was performed. He developed Grade 2 nausea, but his right hypochondralgia reduced, liver dysfunction improved, and he successfully completed radiotherapy. At approximately the same time his anemia progressed, and colonoscopy revealed recurrent bleeding from the tumor. Re-irradiation (15 Gy in 5 fractions) of the rectal tumor was carried out and a blood transfusion was performed for the bleeding. He was discharged after confirmation the anemia had not progressed. Few reports have been published on the use of both palliative re-irradiation to stop bleeding from rectal cancer and palliative low-dose WLRT. Based on our experience with this case, we believe that palliative radiotherapy can be useful in treating patients with a poor prognosis.
INTRODUCTION: Palliative care (PC) aims to treat symptoms independently of the disease. In many medical disciplines, including oncology, there is an emphasis on personalizing treatment, identifying the most effective therapeutic option by studying the genetic heritage of the patient and the molecular characteristics of the disease. PC, on the other hand, encompasses the overall (physical and spiritual) well-being of the patient and his or her caregivers. The increasing use of early PC and its integration with oncology could represent a fruitful collaboration among specialists.
CASE DESCRIPTION: We present the case of a 79-year-old woman with advanced breast cancer attending our institute who was referred to our PC Unit because of continuous ear pain, paresthesia around the mouth, strabismus, and facial dysesthesia. The patient was in good clinical condition (Eastern Cooperative Oncology Group 1) and was undergoing chemotherapy at the time. For these reasons, the PC physician carefully assessed the pain characteristics and differential diagnosis and discussed them with the oncologist, radiologist, and neurologist. Joint consultation led to a specific study of Meckel cave by MRI, revealing an extrameningeal gasserian ganglion metastasis, a very rare localization of breast cancer.
CONCLUSION: We present a case that underlines the importance of specialized PC assessment not limited to the control of symptoms. The search for the etiopathogenesis of a patient's symptoms and the evaluation of overall clinical conditions may be necessary to plan appropriate diagnostic evaluations, target palliative therapies, and achieve effective symptom control.
Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective “outside” opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.