The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
A palliative approach to care focuses on what matters most to patients with life-limiting illness, including chronic kidney disease (CKD). Despite recent publication of related clinical practice guidelines in nephrology, there is limited information about how to practically implement these recommendations. In this Perspective, we describe our experience integrating a palliative approach within routine care of patients with CKD G4-G5 across a provincial kidney care network over the past 15 years. The effort was led by a multidisciplinary group, tasked with building capacity and developing tools and resources for practical integration within a provincial network structure. We used an evidence-based framework that includes recommendations for four pillars of palliative care to guide our work: 1) patient identification, 2) advance care planning, 3) symptom assessment & management, and 4) caring of the dying patient & bereavement. Activities within each pillar have been iteratively implemented across all kidney care programs using existing committees and organizational structures. Key quality indicators were used to guide strategic planning and improvement. We supported culture change through use of multiple strategies simultaneously. Altogether, we established and integrated palliative care activities into routine CKD G4-G5 care, across the continuum from non-dialysis to dialysis populations.
On 2 January 2020, Singapore implemented preventive measures to minimise importation of COVID-19 cases after China reported its first case to the World Health Organisation on 31 December 2019, in what was to become a global pandemic. After confirming its first local case of COVID-19 on 23 January 2020, Singapore has adopted increasingly stringent containment measures, moving into mitigation mode when the number of cases escalated. Local hospitals have also instituted progressively stricter restrictions on visitation hours and the number of visitors. As of 28 May 2020, there were 33,249 confirmed cases of COVID-19, with 14,925 cases under observation, 18,294 cases discharged, 7 patients in critical condition and 23 deaths attributed to COVID-19.
PURPOSE: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era.
PRIMARY PRACTICE SETTING(S): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care.
FINDINGS/CONCLUSIONS: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: .
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care.
METHODS: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services.
RESULTS: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors.
CONCLUSIONS: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
The Japan Geriatrics Society has so far announced "The Japan Geriatrics Society Position Statement 2012" and "Guidelines for the Decision-Making Processes in Medical and Long-Term Care for the Elderly - Focusing on the Use of Artificial Hydration and Nutrition" related to end-of-life care for older adults. In 2018, the Ministry of Health, Labor and Welfare revised the "Guidelines for the Decision-Making Processes in Medical and Long-Term Care in the End of Life," recommending the practice of advance care planning (ACP). This was the first time when the Japanese government publicized its stance on ACP. Immediately after the government's announcement, the Japan Medical Association announced its committee report, "The Super-aged Society and the End-of-life Care," which also recommended the practice of ACP. The guidelines were published when the society was experiencing substantial changes related to geriatric care in Japan, and required timely and ethically appropriate decision-making processes. However, because ACP is a concept imported from English-speaking countries, some Japanese people could find it difficult to understand the role and methodology of ACP because of differences in culture and the medical/long-term care system. Therefore, the Japan Geriatrics Society has decided to publish the "Recommendations for the Promotion of Advance Care Planning" for medical and long-term care professionals nationwide with the aim of using the recommendations on a daily basis. The society recognizes ACP as indispensable to improve end-of-life care for individuals, particularly for older adults. We anticipate that the recommendations will provide practical guidance for those strenuously working toward this goal.
Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.
Background: Acupuncture is one of the fastest developing evidence bases in Complementary Medicine and is one of the leading therapies included within integrative health care. This narrative review includes two separate parts: the first is about evaluation of the current evidence status in reviews on acupuncture and the second examines and gives examples of available recommendations on acupuncture in treatment guidelines from health care experts and public health organizations recommending acupuncture as a viable treatment in patients in palliative care.
Methods: Electronic searches were performed in PubMed using the terms "acupuncture" + "palliative" and adding the term "safety" to find review articles documenting safety and evidence of effectiveness of acupuncture for treatment of symptoms in palliative care patients. Treatment guidelines that recommend use of acupuncture for symptom control in palliative care were found by searching through a database currently under construction by the lead author.
Results: Acupuncture shows emerging evidence for 17 indications in palliative care. Examples were found and presented of publications recommending acupuncture for treatment of symptoms for patients in palliative care from Government, public health, oncology, and medical expert sources. The most publications are in oncology, but other conditions were found and a number were found in pediatric care.
Conclusions: While the evidence for use of acupuncture to treat symptoms in palliative care patients is relatively weak, the evidence base is growing. Experts worldwide are also increasingly recommending acupuncture as a treatment for symptoms in palliative care. Since acupuncture is a safe, nonpharmacological treatment but with small, clinically significant effects, these recommended uses appear as pragmatic efforts to bridge the gap of treatment options available to this patient group.
BACKGROUND AND OBJECTIVE: Integration of specialist palliative care into routine oncologic care improves patients' quality of life and survival. NCCN cancer treatment guidelines are instrumental in standardizing cancer care; yet, it is unclear how palliative and hospice care are integrated in these guidelines. In this study, we examined the frequency of occurrence of "palliative care" and "hospice care" in NCCN guidelines and compared between solid tumor and hematologic malignancy guidelines.
MATERIALS AND METHODS: We reviewed all 53 updated NCCN Guidelines for Treatment of Cancer. We documented the frequency of occurrence of "palliative care" and "hospice care", the definitions for these terms if available, and the recommended timing for these services.
RESULTS: We identified a total of 37 solid tumor and 16 hematologic malignancy guidelines. Palliative care was mentioned in 30 (57%) guidelines (24 solid tumor, 6 hematologic). "Palliative care" was mentioned more frequently in solid tumor than hematologic guidelines (median 2 vs. 0, P=0.04). Among the guidelines that included palliative care in the treatment recommendation, 25 (83%) only referred to NCCN palliative care guideline. Specialist palliative care referral was specifically mentioned in 5/30 (17%) guidelines. Only 14/24 (58%) solid tumor guidelines and 2/6 (33%) hematologic guidelines recommended palliative care in the front line setting for advanced malignancy. Few guidelines (N=3/53, 6%) mentioned hospice care.
CONCLUSION: "Palliative care" was absent in almost half of NCCN cancer treatment guidelines and was rarely discussed in guidelines for hematologic malignancies. Our findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
IMPLICATIONS FOR PRACTICE: Integration of specialist palliative care into routine oncologic care is associated with improved patient outcomes. NCCN Clinical Practice Guidelines in Oncology have an important role to standardize palliative care involvement for cancer patients. It is unclear how often palliative care referral is recommended in these guidelines. In this study involving 53 NCCN Guidelines for Treatment of Cancer, the researchers found that palliative care was not mentioned in over 40% of NCCN guidelines and was rarely discussed in guidelines for hematologic malignancies. These findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
BACKGROUND: Donation after circulatory determination of death (DCD) is responsible for the largest increase in deceased donation over the past decade. When the Canadian DCD guideline was published in 2006, it included recommendations to create standard policies and procedures for withdrawal of life-sustaining measures (WLSM) as well as quality assurance frameworks for this practice. In 2016, the Canadian Critical Care Society produced a guideline for WLSM that requires modifications to facilitate implementation when DCD is part of the end-of-life care plan.
METHODS: A pan-Canadian multidisciplinary collaborative was convened to examine the existing guideline framework and to create tools to put the existing guideline into practice in centres that practice DCD.
RESULTS: A set of guiding principles for implementation of the guideline in DCD practice were produced using an iterative, consensus-based approach followed by development of four implementation tools and three quality assurance and audit tools.
CONCLUSIONS: The tools developed will aid DCD centres in fulsomely adapting the Canadian Critical Care Society Withdrawal of Life-Sustaining Measures guideline.
Background: Despite level 1 evidence demonstrating the equivalence of single-fraction radiotherapy (sfrt) and multiple-fraction radiotherapy (mfrt) for the palliation of painful bone metastases, sfrt remains underused. In 2015, to encourage the sustainable use of palliative radiation oncology resources, CancerCare Manitoba disseminated, to each radiation oncologist in Manitoba, guidelines from Choosing Wisely Canada (cwc) that recommend sfrt. We assessed whether dissemination of the guidelines influenced sfrt use in Manitoba in 2016, and we identified factors associated with mfrt.
Methods: All patients treated with palliative radiotherapy for bone metastasis in Manitoba from 1 January 2016 to 31 December 2016 were identified from the provincial radiotherapy database. Patient, treatment, and disease characteristics were extracted from the electronic medical record and tabulated by fractionation schedule. Univariable and multivariable logistic regression analyses were performed to identify risk factors associated with mfrt.
Results: In 2016, 807 patients (mean age: 70 years; range: 35-96 years) received palliative radiotherapy for bone metastasis, with 69% of the patients having uncomplicated bone metastasis. The most common primary malignancies were prostate (27.1%), lung (20.6%), and breast cancer (15.9%). In 62% of cases, mfrt was used-a proportion that was unchanged from 2015. On multivariable analysis, a gastrointestinal [odds ratio (or): 5.3] or lung primary (or: 3.3), complicated bone metastasis (or: 4.3), and treatment at a subsidiary site (or: 4.4) increased the odds of mfrt use.
Conclusions: Dissemination of cwc recommendations alone did not increase sfrt use by radiation oncologists in 2016. A more comprehensive knowledge translation effort is therefore warranted and is now underway to encourage increased uptake of sfrt in Manitoba.
The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a "good death". This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline-directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure.
The Indian Society for Study of Pain (ISSP), Cancer Pain Special Interest Group guidelines on palliative care aspects in cancer pain in adults provide a structured, stepwise approach which will help to improve the management of cancer pain and to provide the patients with a minimally acceptable quality of life. The guidelines have been developed based on the available literature and evidence, to suit the needs, patient population, and situations in India. A questionnaire based on the key elements of each sub draft addressing certain inconclusive areas where evidence was lacking was made available on the ISSP website and circulated by E-mail to all the ISSP and Indian Association of Palliative Care (IAPC) members. In a cancer care setting, approaches toward managing pain vary between ambulatory setting, home care setting, acute inpatient setting, and end-of-life care in hospice setting. We aim to expound the cancer pain management approaches in these settings. In an ambulatory palliative care setting, the WHO analgesic step ladder is used for cancer pain management. The patients with cancer pain require admission for acute inpatient palliative care unit for poorly controlled pain in ambulatory and home care settings, rapid opioid titration, titration of difficult drugs such as methadone, acute pain crisis, pain neuromodulation, and pain interventions. In a palliative home care setting, the cancer pain is usually assessed and managed by nurses and primary physicians with a limited input from the specialist physicians. In patients with cancer at the end of life, the pain should be assessed at least once a day. Moreover, physicians should be trained in assessing patients with pain who are unable to verbalize or have cognitive impairment.
Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives.
COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.
Dying is a natural part of life; however, death is often a fearful, frightening event. Dying in the midst of the COVID-19 pandemic presents challenges that magnify normative fears and may interfere with a healthy grieving process. To maintain a resilient spirit among those who are at risk of losing a loved one or who have lost a family member to COVID-19, it is important that they be provided with the necessary contextually and culturally appropriate skills and resources to facilitate healing in the face of hardship and uncertainty.
In late February and early March 2020, Italy became the European epicenter of the COVID-19 pandemic. Despite increasingly stringent containment measures enforced by the government, the health system faced an enormous pressure, and extraordinary efforts were made in order to increase overall hospital beds' availability and especially ICU capacity. Nevertheless, the hardest-hit hospitals in Northern Italy experienced a shortage of ICU beds and resources that led to hard allocating choices. At the beginning of March 2020, the Italian Society of Anesthesia, Analgesia, Resuscitation, and Intensive Care (SIAARTI) issued recommendations aimed at supporting physicians in prioritizing patients when the number of critically ill patients overwhelm the capacity of ICUs. One motivating concern for the SIAARTI guidance was that, if no balanced and consistent allocation procedures were applied to prioritize patients, there would be a concrete risk for unfair choices, and that the prevalent "first come, first served" principle would lead to many avoidable deaths. Among the drivers of decision for admission to ICUs, age, comorbidities, and preexisting functional status were included. The recommendations were criticized as ageist and potentially discriminatory against elderly patients. Looking forward to the next steps, the Italian experience can be relevant to other parts of the world that are yet to see a significant surge of COVID-19: the need for transparent triage criteria and commonly shared values give the Italian recommendations even greater legitimacy.
Facing the possibility of a surge of COVID-19-infected patients requiring ventilatory support in Intensive Care Units (ICU), the Singapore Hospice Council and the Chapter of Palliative Medicine Physicians forward its position on the guiding principles that ought to drive the allocation of ICU beds and its role in care of these patients and their families.