Background:
Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making.
Aim:
To ...examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries.
Design:
Cross-sectional telephone survey, in March 2020.
Setting:
Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15–25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive.
Results:
Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response.
Conclusion:
The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.
Abstract BACKGROUND Medical Aid in Dying (MAiD) is now legal in 10 US states and Washington, DC, allowing terminally ill patients to self-administer medications to peacefully end their life. There is ...little published on pediatric hospitals’ approach to young adult patients requesting MAiD. METHODS We review the two patients who have participated in MAiD at the Center for Cancer and Blood Disorders at Children’s Hospital Colorado (CHCO). We also explore publicly available Colorado MAiD statistics. RESULTS Between 2017 and 2022, there have been 1,090 prescriptions written for MAiD medication in Colorado, 5 of which were for patients aged 18-34 (0.5%). Two of these patients were treated at CHCO. Patient A was a 26 year old male with a CNS non-germinomatous germ cell tumor whose treatment was complicated by mucormycosis and severe engraftment syndrome. He relapsed 23 months after completing therapy. He had neurologic decline including ataxia and blindness, at which time he requested MAiD. Patient B was a 24 year old male with multiply recurrent IDH-mutant medullary high grade glioma. With metastatic progression, he had many tumor-related symptoms including dysphagia, dysarthria, and weakness impacting his activities of daily living, so he requested MAiD. Both patients had multidisciplinary care conferences with neuro-oncology, social work, ethics, psychology, and palliative care. After completing psychological evaluation and all steps required by law, they were prescribed DDAMP2 (digoxin 50 mg, diazepam 1 gram, morphine 15 grams, and propranolol 2 grams). Both patients took the medications and died peacefully. Barriers encountered included infrequency of MAiD requests leading to unclear policies and processes. CONCLUSIONS Young adults represent a small but important subset of those seeking MAiD prescriptions. Despite challenges, patients were able to receive MAiD without delay in a compassionate manner. Our experience may be applicable to other pediatric hospitals facing these requests.
Abstract BACKGROUND Among children, bleeding from brain metastases is rare. Bleeding could be caused by: cancer, treatments and chemotherapy/other drugs such as Bevacizumab, NSAIDs and ...anticoagulants. We report a case of brain RT after metastases bleeding. METHODS A 14-years-old boy with a negative previous medical history presented to the Emergency Department with seizures and loss of consciousness. Full-body CT scan revealed brain and renal haemorrhages and a right testicular lesion. Serum βhCG was 223,773 mIU/mL. Neurosurgical bleeding control and right orchiectomy were performed: the histopathology revealed a metastatic mixed non-seminomatous germ cell neoplasia of the testis. First-line chemotherapy (4 cycles of Cisplatin/Etoposide/Ifosfamide) and second-line treatments (Paclitaxel/Ifosfamide/Cisplatin and Gemcitabine/Paclitaxel/Oxaliplatin) were performed. Suddenly, he presented with left-sided hyposthenia and partial left hemibody seizure. CT scan revealed 2 haemorrhagic brain lesions, one in each hemisphere. Surgery was not feasible. We started anti-oedema and anti-epileptic therapy, and whole brain RT (WBRT, 36 Gy/12 fx, BEDα/β= 10 Gy= 46.8 Gy). After 5 days from the start, RT had a 7-day stop because of acute oedema and clinical deterioration. Fourth-line chemotherapy was administered with CarboPEB (1st of further 4 cycles), and then WBRT was restarted. At the end of WBRT a stereotactic RT boost to both the haemorrhagic lesions was delivered (20 Gy/10 fx, BEDα/β= 10 Gy= 24.0 Gy). As of today, eight months after the end of therapy, the patient is free from disease and βhCG is negative. CONCLUSION Palliative RT in children is a non-conventional indication, but potentially effective at providing rapid haemostasis, especially in selected cases (surgery not feasible/contraindicated, adult-type histologies, …) and it is ensuring a good tumor control and low-grade acute toxicities. Hypofractionation is suggested to balance patient comfort and treatment effectiveness, especially when life expectancy is short. The optimal RT schedule, dose and fractionations need to be further investigated.
Objective:
To identify what laypersons know about palliative care using the Palliative Care Knowledge Scale (PaCKS). A secondary aim was to establish preliminary normative data for the PaCKS.
...Methods:
A sample of 301 adults were recruited via Amazon’s Mechanical Turk database. Participants were administered the PaCKS along with a demographic questionnaire.
Results:
The mean score on the 13-item PaCKS was 5.25 (standard deviation = 4.77, range: 0-13), the median was 5, and the mode was 0, with a significant proportion of participants selecting “I don’t know” for every item. Women scored significantly higher than men, and 45- to 54- and 55- to 64-year-olds scoring highest. The PaCKS was also significantly positively correlated with education.
Conclusion:
Broadly, laypersons lack knowledge about some key aspects of palliative care, though palliative care knowledge is highly variable across individuals and some groups. Targeted educational interventions are essential to improve knowledge of palliative care in order to increase access to this type of life-enhancing, supportive service.
Background:
Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist ...palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as ‘generalist’, ‘basic’ and ‘a palliative approach’ are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted.
Aim:
To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care.
Design:
The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care.
Data sources:
The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken.
Conclusion:
Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.
Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients’ and families’ experiences. We aimed to clarify appropriate SPC ...referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (
n
= 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), or none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding “none of these” responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment.
Summary Background Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced ...cancer on several aspects of quality of life. Methods The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0–2, and a clinical prognosis of 6–24 months. Quality of life (Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being FACIT-Sp scale and Quality of Life at the End of Life QUAL-E scale), symptom severity (Edmonton Symptom Assessment System ESAS), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale CARES-MIS) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov , number NCT01248624. Findings 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points 95% CI −0·27 to 7·40, p=0·07), a significant difference in QUAL-E (2·25 0·01 to 4·49, p=0·05) and FAMCARE-P16 (3·79 1·74 to 5·85, p=0·0003), and no difference in ESAS (−1·70 −5·26 to 1·87, p=0·33) or CARES-MIS (−0·66 −2·25 to 0·94, p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group. Interpretation Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer. Funding Canadian Cancer Society, Ontario Ministry of Health and Long Term Care.
Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services.
To assess the effect of CONNECT (Care Management by ...Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes.
This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle.
The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care.
The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale HADS: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted.
A total of 672 patients were enrolled (mean SD age, 69.3 10.2 years; 360 women 53.6%). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 28.2 vs 134.1 28.1; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 16.6 vs 24.0 16.1; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 3.4 vs 4.8 3.7, adjusted mean difference, -0.08 95% CI, -0.71 to 0.57, P = .82; HADS anxiety subscale score: 5.7 3.9 vs 5.4 4.2, adjusted mean difference, -0.31 95% CI, -0.96 to 0.33, P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention.
This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists.
ClinicalTrials.gov Identifier: NCT02712229.
Primary palliative care (PPC) is provided by the primary team and is essential for high-quality surgical care. There is a recognized PPC clinical and research need but little work on the optimal way ...to teach PPC to general surgery residents. We sought to define important factors of PPC pedagogy (i.e. nature and practice of teaching).
Eight semi-structured and multi-professional focus groups (n = 34) were performed. Discussion was transcribed, and de-identified. Qualitative approaches were used to encode, identify, and categorize emergent themes.
Emergent themes included: establishing a baseline knowledge, use of existing resources, simulation and debriefings, and emphasis on authentic clinical opportunities with graduated responsibility. A tension between resident entrustability and hesitancy of faculty to entrust was identified.
PPC must be taught in surgical residency and the themes identified here will inform development and implementation of a PPC curriculum.
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•Primary Palliative Care (PPC) by the primary team is essential to high quality care.•8 multi-professional focus groups with 34 total individuals, qualitative approach.•Didactic resources exist to support an integrated curriculum.•Progressive entrustment is essential and the key to curriculum design.
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