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It's not palliative care, it's palliative treatment
... Patients in our interviews urged for a compassionate multidisciplinary team who conveyed a sense of security, empowerment and hope through symptom relief. The advantages of oncologic and palliative co-management have been well documented [10,[33][34][35]. Reviews of specialist PC have also highlighted a lack of training on communication skills at the end of life and standardised referral to PC [36][37][38]. ...
... To ensure continuity of care, early involvement of palliative care [45], particularly for symptom management, should be an integrated component of care for oncology patients even if end-of-life planning is not. Training in the assessment and management of both symptom clusters and psychosocial issues such as anxiety and demoralisation, which have been emphasised in previous studies [34,35], would be essential. The current capacity of Australian oncology and palliative care services for tackling patients' multiple concurrent symptoms may depend on system changes that prioritise coordinated symptom management strategies. ...
Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer.
Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically.
Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden.
Multiple symptoms have a profound impact on patients' autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.
... A majority of these procedures involve intravenous access, feeding access, or tracheostomy placement for mechanical ventilation. Despite advances in pediatric palliative care, parents report that they do not feel that their children's symptoms are being controlled well at the end of life (9)(10)(11)(12)(13). One study highlighted the magnitude and often short time from invasive procedures to the time of death experienced by some children (14). ...
Care for pediatric patients with serious or potentially life-limiting illness involves the interplay of multiple medical and surgical teams within the hospital. Pediatric surgeons are capable of performing procedures that can improve the quality of life for children facing serious illness, but which also carry the potential for significant risk and burden. Patients and families are often faced with decisions about invasive surgical procedures and interventions, stressing the need for seamless collaboration between palliative care and surgical providers. Equally important is the need for clear and open-ended communication with patients and families by all medical teams to determine if potential surgical procedures and interventions align with their goals and to ensure that the perceived benefits of interventions outweigh any risks. Over the last two decades, pediatric palliative care has grown into a thriving medical subspecialty Despite the importance of collaborative care, there is lack of literature on the interaction of pediatric surgery and palliative care and the role of pediatric surgeons in providing primary palliative care. This review defines surgical pediatric palliative care, and provides an in-depth discussion of the unique complexities involved in caring for children with serious and potentially life-limiting illness, while highlighting specific challenges through detailed case presentations.
... Further, when patients are presented with the options of continued life-prolonging treatment or of palliative treatment without life-prolonging interventions, patients and their providers may redirect the goals of treatment without feeling that they are "giving up." As such, the term "palliative treatment" is preferable to the term "palliative care" (Kon and Ablin 2009). guarantees relief of unbearable suffering. ...
... In such cases, healthcare providers administer medications, provide comfort measures (eg, holding), and attempt to fully treat the patients suffering. Indeed, palliative treatment (ie, the treatment of suffering) 50 has been wellaccepted as an essential component of medical care, and palliative treatment protocols tailored to the needs of neonates have been developed. 51 As noted above, palliative treatment without life-prolonging interventions in many such cases is appropriate and permissible under CAPTA. ...
Despite advances in the care of infants, there remain many newborns whose medical conditions are incompatible with sustained life. At times, healthcare providers and parents may agree that prolonging life is not an appropriate goal of care, and they may redirect treatment to alleviate suffering. While pediatric palliative treatment protocols are gaining greater acceptance, there remain some children whose suffering is unrelenting despite maximal efforts. Due to the realization that some infants suffer unbearably (ie, the burdens of suffering outweigh the benefits of life), the Dutch have developed a protocol for euthanizing these newborns. In this review, I examine the ethical aspects of 6 forms of end of life care, explain the ethical arguments in support of euthanasia, review the history and verbiage of the United States regulations governing limiting and withdrawing life-prolonging interventions in infants, describe the 3 categories of neonates for whom the Dutch provide euthanasia, review the published analyses of the Dutch protocol, and finally present some practical considerations should some form of euthanasia ever be deemed appropriate.
This volume provides a practical overview of the ethical issues arising in pediatric practice. The case-based approach grounds the bioethical concepts in real-life situations, covering a broad range of important and controversial topics, including informed consent, confidentiality, truthfulness and fidelity, ethical issues relating to perinatology and neonatology, end-of-life issues, new technologies, and problems of justice and public health in pediatrics. A dedicated section also addresses the topics of professionalism, including boundary issues, conflicts of interests and relationships with industry, ethical issues arising during training, and dealing with the impaired or unethical colleague. Each chapter contains a summary of the key issues covered and recommendations for approaching similar situations in other contexts. Clinical Ethics in Pediatrics: A Case-Based Textbook is an essential resource for all physicians who care for children, as well as medical educators, residents and scholars in clinical bioethics.
Case narrative Zak was a happy, healthy 3-year-old boy. One morning, Zak’s parents had difficulty waking him. They noted some spots on Zak’s chest and face, and thought that he had a mild viral infection. As the day progressed, Zak became increasingly lethargic and the spots increased, so his mother brought him to the doctor. The pediatrician was very concerned and activated the emergency medical services. Zak was taken to a local emergency department where he was quickly diagnosed with meningococcal septic shock. Appropriate therapies were initiated and Zak was transported to the regional pediatric intensive care unit (PICU). In the PICU, Zak continued to receive appropriate treatment. His parents remained at his bedside and were clearly loving and very concerned for their child’s welfare. After several days, it was apparent that the septic emboli (which are the hallmark of meningococcal sepsis) had blocked blood flow in many of Zak’s capillary beds. In addition to renal and hepatic impairment, Zak’s hands and feet had obvious signs of necrosis, and it was assumed that there were infarcted areas in his brain (although this could not be confirmed because he was not stable enough to move to the scanner).
Se realiza una breve revisión acerca de los elementos básicos de la Bioética, fundamentalmente de los principios que la rigen, insistiendo en la importancia de la Solidaridad y del humanismo como aspectos indisolublemente unidos al análisis ético del accionar humano en el campo de las Ciencias Médicas.
Language is used to achieve different outcomes. Discourse constructs social entities by words chosen and shared language. Patterns of discourse carry particular power relations. Language shows the influence of modernity on our view of death and dying. The multiple definitions of palliative care indicate different care models across services and different groups of individuals who qualify for services. Words chosen by palliative specialists may confuse the public. Palliative care language can separate or confuse people about the reality of palliative care and be exclusionary to other specialties who work outside the field. Certain phrases may be depersonalizing or reflect a hierarchy in types of treatment valued by individuals. Great care is needed in choosing words to describe palliative care, since words incarnate the service.
Few cancer centers have developed acute palliative care units (APCUs). The purpose of this study is to highlight clinical interventions and financial outcomes during a typical 1-month period on an APCU.
We evaluated consecutive patients admitted to our APCU from February 1 to 28, 2009, regarding demographic information, sources of and reasons for admissions, resuscitation status, clinical interventions, disposition, and reimbursement data.
Forty-two patients were admitted during a 1-month period. Of these, 30 (71%) were referred from the inpatient palliative care consultation team. In all, 10 (24%) patients had a full code status on admission, and 8 had their status changed to do not resuscitate (DNR) prior to discharge. A total of 11 (26%) patients were discharged home with hospice care, 12 (29%) died on the APCU, and 10 (24%) were discharged home with outpatient follow-up visits. All patients received intravenous medications and the majority received intravenous antibiotics. All patients met acute care criteria for hospitalization, and financial reimbursement was satisfactory and comparable to that of other oncology patients.
The APCU model is designed for the care of very complex advanced cancer patients. Palliative interventions are given simultaneously with other medical interventions. The APCU is labor intensive and well reimbursed.
Pediatric surgeons can play an important role in offering procedures that may improve the quality of life for terminally ill children. As with all palliative interventions, surgical therapies should be evaluated in the context of explicitly defined treatment goals while weighing the risks and benefits of procedures in the context of a shortened life span. It is essential that pediatric surgeons become active members in the multidisciplinary team that provides palliative care.
The treatment of suffering is now recognized as an essential component of medical care. By referring to this treatment as "palliative care," however, we diminish its importance. In this essay, we propose a shift in our conception of the treatment of suffering and advocate for the use of a new term: "palliative treatment." We argue that the word "treatment" is more appropriate than "care" because the interventions we employ are evidence-based, goal-directed, and effective in diminishing suffering. We articulate that this alteration in terminology is necessary because it facilitates patient and physician understanding of the importance and efficacy of palliative treatment interventions. We enumerate four distinct forms of suffering that each requires treatment: physical, psychological, existential, and spiritual. Finally, we argue that in rare cases when aggressive palliative treatment has been unsuccessful in diminishing suffering to a degree that is bearable, allowing death to occur unimpeded may be viewed as therapeutic because in death the patient's suffering is finally ended.
The purpose of this study was to assess hospice patients' attitudes regarding the discussion of spiritual issues with their physicians. We conducted in-depth interviews using open-ended questions on living with illness, spirituality and religion, and physician-patient relationships. The interviews were audiotaped, transcribed, and analyzed for dominant themes. The following dominant themes were identified: (1) treating the whole person, (2) treating with sensitivity, (3) favorable attitudes toward religious or spiritual discussions with doctors, and (4) no "preaching." Our findings suggest that patients do not expect physicians to be their primary spiritual advisors; however, physicians should be aware of and comfortable communicating with patients about religious or spiritual issues. More training in this topic may enhance the care physicians provide to patients near the end of life.
A chaplain's ability to provide care where it is most needed depends upon some method of pastoral triage. Screening for spiritual needs of children and adolescents has been a largely neglected area. A Delphi panel developed elements to be included in a tool to screen 10-18 year olds' spiritual needs and resources. The Delphi panelists were informed of survey results of school-aged children and adolescents' opinions on spiritual issues important to them if they were hospitalized. A case study of the tool's use was conducted with a convenient sample of children and adolescents. Subsequent pilot use of the tool by five pediatric chaplains demonstrated the tool's utility in identifying patients' spiritual issues, ability to serve as a springboard to deeper discussion, and as a basis for initiating discussion of spiritual concerns with other disciplines on the healthcare team. Feedback indicates the potential clinical usefulness of this tool for hospitalized children and adolescents.
This paper examines the place of illness and death in the lives of healthy children and their ill siblings at the end stages of life. The behaviors that the children exhibit provide important insights into the children's views of their lives as well as their views of death.
The purpose of this study was to assess hospice patients’ attitudes regarding the discussion of spiritual issues with their physicians. We conducted in-depth interviews using open-ended questions on living with illness, spirituality and religion, and physician-patient relationships. The interviews were audiotaped, transcribed, and analyzed for dominant themes. The following dominant themes were identified: (1) treating the whole person, (2) treating with sensitivity, (3) favorable attitudes toward religious or spiritual discussions with doctors, and (4) no “preaching.” Our findings suggest that patients do not expect physicians to be their primary spiritual advisors; however, physicians should be aware of and comfortable communicating with patients about religious or spiritual issues. More training in this topic may enhance the care physicians provide to patients near the end of life.
Palliative care aims to improve quality of life by early identification, impeccable assessment, and treatment of symptoms while meeting other needs of patients with advanced and progressive disease. It comprises disease-specific and symptom-guided interventions, with emphasis on preparing patients and their relatives for foreseeable, highly distressing clinical problems. Use of inappropriate mechanisms and algorithms in standard emergency treatment might be avoidable for the sake of patient-centred inpatient and outpatient palliative care during the last phase of life. This Review reflects a clinical attitude in palliative care that differs from oncological emergency management. We give examples of typical clinical crises at the end of life and discuss treatment to aid care before, during, and after such crises.
In retrospective studies, estimates of hastened dying among seriously ill patients range from <2% in one national survey to as much as 20% in end-stage disease cohorts.
To examine, in prospective studies, dying patients in the months before death, in order to understand the wish to die.
Patients with advanced ALS with a high likelihood of death or need for tracheostomy within 6 months were identified. Patients were assessed monthly with an extensive psychosocial interview, including a diagnostic interview for depression. Family caregivers were interviewed on the same schedule and also after patient deaths.
Eighty patients with ALS were enrolled, 63% of eligible patients; 53 died over follow-up. Ten (18.9%) of the 53 expressed the wish to die, and 3 (5.7%) hastened dying. Patients expressing the wish to die did not differ in sociodemographic features, ALS severity, or perceived burden of family caregivers. They were more likely to meet criteria for depression, but differences were smaller when suicidality was excluded from the depression interview. Patients who expressed the wish to die reported less optimism, less comfort in religion, and greater hopelessness. Compared with patients unable to act on the wish to die, patients who hastened dying reported reduction in suffering and increased perception of control over the disease in the final weeks of life.
These findings suggest caution in concluding that the desire to hasten dying in end-stage disease is simply a feature of depression.
Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.
Approaching death: improving care at the end of life. Committee on Care at the End of Life, Division of Health Care Services, Institute of Medicine
- Mj Field
- Ck Cassel
Field MJ, Cassel CK, eds. Approaching death: improving care at the end
of life. Committee on Care at the End of Life, Division of Health Care
Services, Institute of Medicine. Washington, DC: National Academy
Press, 1997.