Palliative care improves communication, symptom control, and support for patients and their families, resulting in an improved quality of life and survival outcomes. The concept of palliative care has been evolving over time; traditionally limited to an oncology population, palliative care is now recommended for all patients living with serious or life-limiting illness. Palliative care can be used to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering and can be delivered in any care setting to optimize quality of life of patients, families, and care providers.
This paper is aimed at focusing on the writings and the experience of the Hospice movement Founder, Dame Cicely Saunders. The in-depth analysis carried out had the objective of verifying if "the way" of Cicely to understand, live and propose palliative care was still current and "beautiful", so that we can nowadays refer to her fascinating "Original Palliative Care". With "beauty" we mean, on the one hand, a way able to allow a personal path of research of the meaning of the disease and of the care, both for those who care and for those who are cared for. On the other hand, it seems to us that Cicely strongly suggests how this path can not be carried out alone, but is only possible within the context of a network of relationships and support, in a so called "relational autonomy", for the patient, included in a "care ethics". The authors believe that the work extensively documents as the overall approach of Cicely, traditional but always to be rediscovered, is still today the most convincing way of conception and action of palliative care.
Au vue de notre expérience en soins palliatifs, nous nous sommes demandés pourquoi la sexualité des patients ne fait-elle pas partie intégrante de la prise en charge globale en soins palliatifs ? Dans notre cadre conceptuel, nous avons travaillé sur les concepts de sexualité, de tabous culturels, de mécanismes de défense des soignants et enfin de dissonance cognitive.
Ce cadre théorique nous a amené à formuler deux hyptohèses :
L'émergence de mécanismes de défense chez les soignants entrave l'ntégration de la sexualité dans la prise en charge globale en soins palliatfs. Ces mécanismes de défense sont l'expression d'une dissonance cognitive.
Afin d'explorer nos hypothèses, nous avons réalisé dix entretiens semi-dirigés avec des soigants travaillant auprès de patients en fin de vie (en unité de soins palliatifs ou en service avec des lits identifiés de soins palliatifs). Après l'analyse des résultats, nos deux hypothèses ont été validées. La confrontation des résultats de l'étude aux apports théoriques nous a permis de dégager des préconisations afin d'intégrer le besoin de sexualité dans notre prise en charge.
Le présent article, sous forme de dialogue, est issu de la réflexion commune entre différents soignants (oncologue, deux psychologues et infirmière de l’équipe de soins de liaison) de l’unité d’hémato-oncologie d’un hôpital universitaire pédiatrique situé au sein de l’Union européenne à propos du suivi d’O. O. était une jeune fille âgée de 15 ans au moment du diagnostic ; elle était atteinte d'une tumeur maligne pelvienne avec infiltration génitale. L’objet de cet article est le partage d’expérience autour de cette situation qui nous a fortement impliqués et a demandé un ajustement permanent de nos pratiques, de nos croyances, nous obligeant ainsi à bousculer nos codes.
OBJECTIVES: The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND).
MATERIAL & METHODS: Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death.
RESULTS: The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions.
CONCLUSIONS: The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.
Palliative care, unlike hospice, can be utilized concurrently with disease-modifying or curative therapies. Some of the benefits of palliative care include improved quality of life, less end-of-life treatment, and decreased medical costs. Furthermore, palliative care can help guide treatment decisions to be in line with patients' physical, psychological, and spiritual needs. On the basis of these benefits, we advocate for palliative care involvement early in the course of advanced malignancy and other terminal diagnoses.
CONTEXT: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.
OBJECTIVE: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers.
METHODS: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS.
RESULTS: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease.
CONCLUSION: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.
La prise en charge d’un patient en fin de vie à son domicile demande une réflexion pluridisciplinaire de tous les intervenants. L’information de la personne et de ses proches ainsi que la prise en compte de tous les aspects de l’accompagnement doivent mener à des prises de décision collégiales. La prise en charge est alors globale autour d’un projet de soins concerté.
Introduction: Stroke is the development of a focal neurological disturbance lasting >24 h, of vascular origin. In India, stroke is one of the leading causes of morbidity and mortality. Most stroke patients, during their duration of treatment and posthospitalization, want relief of suffering, a sense of control and minimized burden on the family.
Aim: The aim of this study is to describe treating doctors' perspectives on the palliative needs of stroke patients in India.
Methodology: This qualitative study was conducted at a tertiary care hospital in South India. A total of 17 doctors involved in the care of stroke patients were interviewed, using an interview guide. The interviews were audio recorded simultaneously. The audio recording was transcribed verbatim, and the data were coded using a grounded theory approach. An inductive approach using thematic analysis was used to manually analyze the data.
Results: Eight themes emerged. (1) Functional disability: loss of independence due to immobility, speech deficits, visual disturbances, feeding difficulties, and incontinence cause immense distress. (2) Physical burden: pain in the form of central poststroke pain, periarthritic shoulder, psychogenic pain, and various sequela of chronic bed bound state like bed sores and pneumonia add to the burden. (3) Psychological needs: depression is common in stroke patients along with other psychological issues such as anxiety, agitation, apathetic state, and behavioral disturbances (4) Social issues: Cost of treatment of stroke patients coupled with their loss of employment leads to huge economic burden. They also face abandonment by children or spouse, in all sections of socioeconomic strata. (5) Caregiver burden: caregiver has a major role in a setting of stroke and in the long-term affects all domains of their lives, compromising their psychological and physical health. (6) Counseling-an unmet need: counseling is particularly important in a setting of stroke for the patient as well as the caregivers and results in a better patient outcome. However, clinicians expressed that it was inadequate due to the huge patient load, time constraints, and lack of effective counseling skills. (7) Spiritual needs: few clinicians stated that existential distress and spiritual struggle are seen in debilitated stroke victims and are often unaddressed. (8) Issues at the end of life care: patients with massive stroke, multiple comorbidities, and poor rehabilitative potential requires end of life care.
Conclusions: From the interviews of the clinicians, we can conclude that care of a stroke patient is more than medical management and rehabilitation, as several other aspects of the patient's life are affected by the condition. The quality of life aspect has to be looked upon as an area that requires active intervention in a setting of stroke. Physical disabilities were viewed as the most significant factor in reducing the quality of life. Spiritual needs have a low priority in comparison to other physical needs. Due to high patient load and time constraints, many of the needs are unaddressed. Two important areas where palliative medicine has a major role in a setting of stroke are counseling and alleviating caregiver burden. However, referral of stroke patients to palliative medicine is low and further research to identify barriers to specialist palliative care of stroke patients will help in promoting the referrals to palliative medicine.
Radiotherapy is an essential component of cancer therapy. Lack of access to radiotherapy in less-developed countries prevents its use for both cure and symptom relief, resulting in a significant disparity in patient suffering. Several recent initiatives have highlighted the need for expanded access to both palliative medicine and radiotherapy globally. Yet, these efforts have remained largely independent, without attention to overlap and integration. This review provides an update on the progress toward global palliative radiotherapy access and proposes a strategic framework to address further scale-up. Synergies between radiotherapy, palliative medicine, and other global health initiatives will be essential in bringing palliative radiotherapy to patients around the globe.
Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.
Most people die when they are old, with multiple pathologies, and while living with frailty or dementia. These circumstances need the specialist skills of geriatric medicine. Death may not be unexpected, but survival and restoration of function are usually uncertain, influencing the approach to medical intervention. Assessment considers medical, functional, mental, social and environmental domains. Care requires a mix of acute, rehabilitation, mental health and palliative expertise, and evolves with changing circumstances. Relief of suffering and maintenance of function are key goals, but not the only ones. Mental distress is as common as physical; investigation- and treatment-burden are important; drug treatments are prone to adverse effects. A focus on person-centredness rather than the end-of-life is needed. This prioritizes respect for individual diversity in needs, assets and priorities, and rigorous decision making, to achieve what is the right intervention for that person at that time.
BACKGROUND: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team.
RESULTS: Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU.
CONCLUSIONS: About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.
BACKGROUND: Self-care practice within the palliative care workforce is often discussed, yet seemingly under-researched. While palliative care professionals are required to implement and maintain effective self-care strategies, there appears little evidence to guide them. Moreover, there is an apparent need to clarify the meaning of self-care in palliative care practice. This paper reports qualitative findings within the context of a broader mixed-methods study. The aim of the present study was to explore the meaning and practice of self-care as described by palliative care nurses and doctors.
METHODS: A purposive sample of 24 palliative care nurses and doctors across Australia participated in semi-structured, in-depth interviews. Interviews were digitally recorded and transcribed prior to inductive qualitative content analysis, supported by QSR NVivo data management software.
RESULTS: Three overarching themes emerged from the analysis: (1) A proactive and holistic approach to promoting personal health and wellbeing to support professional care of others; (2) Personalised self-care strategies within professional and non-professional contexts; and (3) Barriers and enablers to self-care practice.
CONCLUSIONS: The findings of this study provide a detailed account of the context and complexity of effective self-care practice previously lacking in the literature. Self-care is a proactive, holistic, and personalised approach to the promotion of health and wellbeing through a variety of strategies, in both personal and professional settings, to enhance capacity for compassionate care of patients and their families. This research adds an important qualitative perspective and serves to advance knowledge of both the context and effective practice of self-care in the palliative care workforce.
The fields of palliative and holistic nursing both maintain a commitment to the care of the whole person, including a focus on spiritual care. Advanced serious illness may pose a plethora of challenges to patients seeking to create meaning and purpose in their lives. The purpose of this article is to introduce scholarly dialogue on the integration of entheogens, medicines that engender an experience of the sacred, into the spiritual and holistic care of patients experiencing advanced serious illness. A brief history of the global use of entheogens as well as a case study are provided. Clinical trials show impressive preliminary findings regarding the healing potential of these medicinal agents. While other professions, such as psychology, pharmacy, and medicine, are disseminating data related to patient outcomes secondary to entheogen administration, the nursing literature has not been involved in raising awareness of such advancements. Research is illustrating their effectiveness in achieving integrative experiences for patients confronting advanced serious illness and their ability to promote presence, introspection, decreased fear, and increased joy and acceptance. Evidence-based knowledge surrounding this potentially sensitive topic is necessary to invite understanding, promote scientific knowledge development, and create healing environments for patients, nurses, and researchers alike.
BACKGROUND: There is a paucity of evidence supporting the benefits of palliative care day therapy services for patients with non-malignant diseases. Outcome measures in this setting are also lacking.
AIM: To evaluate the use of the modified Measure Yourself Medical Outcome Profile 2 (MYMOP2) tool in tailoring day therapy services toward the needs of patients with non-malignant conditions Method: A single system, 'before and after' design quality improvement study was conducted. Data were collected regarding outcome measures, re-referral rates and mortality.
RESULT: After the introduction of the modified MYMOP2 tool, there was an improvement in the mean outcome scores for patients with non-malignant disease. Re-referral rates for these patients dropped by 28% during the follow up period, with no change in mortality.
IMPLICATIONS FOR PRACTICE: These findings suggest that using the modified MYMOP2 tool to tailor and measure the outcome of holistic day therapy services results in a more sustained improvement for patients with non-malignant disease.
Parkinson's disease (PD) is a slowly progressive multi-system neurodegenerative disorder, with no available disease-modifying treatment. The disease is associated with motor and non-motor symptoms leading to impaired quality of life, disability and significant caregiver distress. Patients with PD benefit from palliative care which provides a holistic approach to meet their multi-faceted needs, including symptom control, communication needs and caregiver support. This article would review on recent articles addressing palliative care for PD.
PURPOSE OF REVIEW: There is increasing emphasis on medical care of the whole patient. This holistic approach encompasses supporting the spiritual or religious needs of the patient. Particularly at the end of life, spiritual concerns may come to the fore as patients recognize and accept their impending death. Physicians may also recognize this spiritual distress but may not be clear on how to provide spiritual support.
RECENT FINDINGS: Tools to screen for spiritual concerns are available for physicians to use. Some physicians wish to go further, supporting patients at the end of life in their spiritual quest. Other physicians express concern about causing more distress to patients in a time of significant need. Descriptions of educational tools, as well as the difference between spiritual generalists and spiritual specialists have emerged. Integration of chaplains into the medical team caring for patients at the end of life will also enhance care of the whole patient.
SUMMARY: The increasing emphasis on whole patient care is leading to increasing focus on spiritual concerns of patients. Although not every patient has an interest in spiritual conversation, most do and medical teams will need to become more educated about appropriate spiritual engagement.
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT.
METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT.
RESULTS: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases).
SIGNIFICANCE OF RESULTS: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.