Palliative Care at the End of Life

Author(s):  
David J. Bearison

Consider the following advice given to parents whose children are dying in hospitals: “If your child has to die, he can die peacefully. You can make sure he is free of pain. You can make sure that everyone has a chance to say good-bye” (Hilden & Tobin, 2003, p. 3). To offer parents this kind of unconditional assurance (i.e., “You can make sure . . . ”) dismisses the confusing and disturbing realities of actually having to care for a child when it becomes increasingly apparent that curative intent is failing and staff begin to question how best to proceed. The complexity of symptom control in various clinical conditions sometimes precludes children from having peaceful deaths. However, when you read findings from the few palliative care studies that exist (and there are few that consider children as participants), issues of pain management and psychosocial support at the end of life do not seem to be so difficult to resolve. These findings promote ideas that, when satisfactory end-of-life care is not achieved, it is because mistakes were made, staff were inadequately trained, and children thereby were made to suffer unnecessarily. Such ways of thinking in turn lead bereft parents to feel guilty at not having empowered themselves to have taken greater control in the care of their child and to have done the right thing for their child. Although mistakes occur, staff can be better trained, and children might unnecessarily suffer, there are very few guarantees of a comfortable way of dying from medical causes. Most textbooks and studies about end-of-life care simply ignore the messy realities and uncertainties, particularly as they pertain to children and their families. The Report to the Board of Directors of the American Psychological Association from its Working Group on Assisted Suicide and End-of-Life Decisions (2003) raised a clarion call to document publicly what it is like, in practical day-by-day terms, for people who die in hospitals and how it affects endof- life decisions for the staff, patients, and families. We all prefer to die quickly, without protracted suffering and pain and without humiliation. Deaths during sleep are particularly preferred.

Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.


Author(s):  
Jayne Wood ◽  
Maureen Carruthers

Specialist palliative care services originally focused on improving the quality of life for patients with a diagnosis of cancer in the terminal phase of their illness. However, organizations, such as the World Health Organization, supported by recent national strategies, such as the End of Life Care Strategy (United Kingdom, 2008), promote the early integration of specialist palliative care into the management of patients with incurable disease, irrespective of the diagnosis. The primary goal of the intensive cardiac care unit is to help patients survive acute threats to their lives. However, the suddenness and severity of illness, particularly when associated with an underlying cardiological diagnosis, often means that the provision of optimal specialist palliative care is challenging. This chapter addresses key issues relating to the provision of specialist palliative care in the challenging and complex environment of the intensive cardiac care unit, including symptom control, end of life care, decision making, and communication. The benefits of multidisciplinary working for effective quality improvement in patient care and best support for patients, families/carers, and staff are also addressed. The importance of interdisciplinary working is highlighted, and, by embedding the principles of holistic care into daily practice, the intensive cardiac care unit can ensure that patients and their families/carers receive the support they need in a timely manner from individuals who are well supported in what is often considered to be one of the most challenging medical environments.


CJEM ◽  
2016 ◽  
Vol 18 (S1) ◽  
pp. S123-S123 ◽  
Author(s):  
C.J. Turner

Introduction: Emergency Physicians (EPs) face growing numbers of palliative care patients presenting to the emergency department (ED). Formal training for EM residents across Canada in this area is not well described. We sought to describe the training Canadian emergency medicine (EM) residents receive in end of life care issues, their attitudes toward it, self-reported knowledge and skills, and the importance they place on further training in this domain. Methods: We conducted an electronic survey across Canada. We collected demographic data, previous education in palliative care, attitudes toward end of life care, and a self-assessment of competency and desires for further training in the main components of palliative care pertinent to EM. We used simple descriptive statistics, a Mann-Whitney test to assess whether previous formal training in palliative care affected current comfort level, and a combination of self-reported knowledge and importance levels placed on key areas. Results: We received 112 responses from 17 different Universities in Canada, with 42% from the CCFP training stream, and 58% from the FRCP stream. Fifty-four percent of respondents had not completed a palliative care rotation during residency or fellowship, which was overwhelming accounted for by FRCP residents (13%, vs. 82% among CCFPs). Having completed formal training in palliative care was significantly associated with general comfort in managing terminally ill patients (p<0.0001). Sixty percent of subjects felt a lack of knowledge and skills was their main limiting factor in providing ideal care for terminally ill patients in the ED. The skills deemed highest priority with lowest comfort level among residents included discussing withdrawing and withholding care, prognosticating, pharmacology and other symptom control. Preferred methods of receiving palliative care teaching included simulation, bedside teaching and small groups. Conclusion: The care of acute illness among palliative care patients is substantially underrepresented in the Canadian EM curriculum, particularly for FRCP trainees. Formal training is associated with increased comfort in caring for patients at the end of their life. High yield teaching interventions could be directed toward knowledge of withdrawing, prognosticating and symptom control. Simulation, bedside teaching and small groups are the preferred method for receiving such teaching.


2016 ◽  
Vol 8 (4) ◽  
pp. 424-427 ◽  
Author(s):  
Sarah Amador ◽  
Claire Goodman ◽  
Louise Robinson ◽  
Elizabeth L Sampson

BackgroundPeople living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care.MethodsAn online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics.Results15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision.ConclusionsRecent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.


2021 ◽  
Vol 13 ◽  
pp. 175883592110422
Author(s):  
Gehan Soosaipillai ◽  
Anjui Wu ◽  
Gino M Dettorre ◽  
Nikolaos Diamantis ◽  
John Chester ◽  
...  

Background: Specialist palliative care team (SPCT) involvement has been shown to improve symptom control and end-of-life care for patients with cancer, but little is known as to how these have been impacted by the COVID-19 pandemic. Here, we report SPCT involvement during the first wave of the pandemic and compare outcomes for patients with cancer who received and did not receive SPCT input from multiple European cancer centres. Methods: From the OnCovid repository ( N = 1318), we analysed cancer patients aged ⩾18 diagnosed with COVID-19 between 26 February and 22 June 2020 who had complete specialist palliative care team data (SPCT+ referred; SPCT− not referred). Results: Of 555 eligible patients, 317 were male (57.1%), with a median age of 70 years (IQR 20). At COVID-19 diagnosis, 44.7% were on anti-cancer therapy and 53.3% had ⩾1 co-morbidity. Two hundred and six patients received SPCT input for symptom control (80.1%), psychological support (54.4%) and/or advance care planning (51%). SPCT+ patients had more ‘Do not attempt cardio-pulmonary resuscitation’ orders completed prior to (12.6% versus 3.7%) and during admission (50% versus 22.1%, p < 0.001), with more SPCT+ patients deemed suitable for treatment escalation (50% versus 22.1%, p < 0.001). SPCT involvement was associated with higher discharge rates from hospital for end-of-life care (9.7% versus 0%, p < 0.001). End-of-life anticipatory prescribing was higher in SPCT+ patients, with opioids (96.3% versus 47.1%) and benzodiazepines (82.9% versus 41.2%) being used frequently for symptom control. Conclusion: SPCT referral facilitated symptom control, emergency care and discharge planning, as well as high rates of referral for psychological support than previously reported. Our study highlighted the critical need of SPCTs for patients with cancer during the pandemic and should inform service planning for this population.


2003 ◽  
Vol 31 (3) ◽  
pp. 365-376 ◽  
Author(s):  
Joseph P. Pestaner

The increasing life expectancy of terminally-ill people has raised many public policy concerns about end-of-life care. Due to increased longevity and the lack of cures for illnesses like cancer and heart disease, palliative care, particularly pain management, has become an important mode OF medical therapy. Palliative care providers feel that “[h]ealth care professionals have a moral duty to provide adequate palliative care and pain relief, even if such care shortens the patient’s life.” Practitioners of forensic medicine grapple with determining when to classify the death of a person formerly receiving palliative care as a non-natural death. Such classification may be paramount in the enforcement of new statutes that aim at preventing assisted suicide or monitoring the quality of health care, but it potentially places forensic medicine and palliative medicine in adversarial roles.


2019 ◽  
Vol 80 (12) ◽  
pp. C184-C189
Author(s):  
Dylan Harris

Palliative and end of life care forms an important part of the role of any doctor in training, and an awareness of a structured approach to managing common symptoms and end of life care is essential. Common symptoms include pain, nausea and vomiting, constipation, and breathlessness. Anticipatory prescribing of the 4 A's (analgesic, anti-emetic, anxiolytic, and anti-secretory) is a proactive approach to ensure medication is available, if required, for common symptoms in the last hours to days of life, such as pain, upper airway secretions, anxiety, and agitation. Prescribing or medication errors in relation to symptom control in palliative care can relate to individual errors, poor communication, poor care coordination, equipment and care planning. There are some important key points relating to prescribing to consider, for example, using recognized conversions when changing between opioids and from the oral to syringe drivers route; that diamorphine and morphine are not equipotent; prescribing liquid opioids in milligrams not millilitres where there are multiple concentrations available; making the indication for steroids clear when used, as they are multiple possible indications (and also their intended duration, to avoid unintended longer term sequelae of steroid use); and avoiding the use of oxygen for symptomatic relief of breathlessness in the absence of hypoxia.


2008 ◽  
Vol 26 (28) ◽  
pp. 4646-4650 ◽  
Author(s):  
Donna L. Johnston ◽  
Kim Nagel ◽  
Debra L. Friedman ◽  
Jane L. Meza ◽  
Craig A. Hurwitz ◽  
...  

PurposePalliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG).MethodsA survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005.ResultsThe survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients.ConclusionDespite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.


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