Singularidades da intervenção psicológica nos cuidados paliativos

Relatório de Prática Clínica apresentado à Escola Superior de Saúde Dr. Lopes Dias do Instituto Politécnico de Castelo Branco para cumprimento dos requisitos necessários à obtenção do grau de Mestre em Cuidados Paliativos, realizada sob a orientação científica da Diretora da ESALD Doutora Ana Paula Gonçalves Antunes Sapeta, do Instituto Politécnico de Castelo Branco, e orientação científica do Assistente Convidado pela Escola Superior de Saúde Dr. Lopes Dias, Mestre Eduardo Manuel Neves Oliveira Carqueja.

Palliative care team visits. Qualitative study through participant observation

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients\' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

Learning, development, and support needs of community palliative care clinical nurse specialists

Background: The palliative care clinical nurse specialist (PC-CNS) is a core member of the specialist palliative care team. According to professional policy, the role has four specific components: clinical practice, education, research, and leadership and management. Little is known about how to support staff in this role. Aim: The aim of this study was to explore what learning, development, and support PC-CNSs in one hospice need to enable them to fulfil all components of their role. Design: Using a descriptive exploratory approach, semi-structured interviews were undertaken with a purposive sample of community PC-CNSs from a hospice in Northern Ireland. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Findings: Seventeen interviews were analysed and three themes identified: influence of organisational culture, influence of the individual, and learning and development solutions. Conclusions: Participants reported that the PC-CNS role was stressful. They identified that the organisational culture and indeed individuals themselves influenced the learning and development support available to help them fulfil the four components of the role. Working relationships and stability within teams affected how supported individuals felt and had implications for managers in meeting the needs of staff while balancing the needs of the service.

Resource utilization and cost analyses of home-based palliative care service provision:The Niagara West End-of-Life Shared-Care Project

Background: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. Aim: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. Design: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Results: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 CAN) were 1,625,658.07 - or 17,112.19 per patient/117.95 per patient day. Conclusion: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations. © 2012 The Author(s).

The Effect of Community-Based Specialist Palliative Care Teams on Place of Care

BACKGROUND: Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death.

OBJECTIVE: The study objective was to examine the place of care in the last 30 days of life.

METHODS: In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort.

RESULTS: After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p < 0.001) than the unexposed group. On the last day of life (place of death), the exposed group had 18% die in an in-patient hospital bed compared to 29% in usual care.

CONCLUSION: Examining place of care in the last month can effectively illustrate the service use trajectory over time.

General practitioner, specialist providers case conferences in palliative care: Lessons learned from 56 case conferences

OBJECTIVE: To describe the utility and acceptability to general practitioners and palliative care staff of case conferences in palliative care. METHOD: Research focussed on case conferences conducted between GPs and staff of three specialist palliative care units (in an inner urban, outer metropolitan and regional setting), at the time of referral of patients to the service. Telephone interviews were conducted with all GPs who participated in a case conference, and focus groups were conducted with palliative care staff. RESULTS: For most GPs, case conferences by teleconference were a time effective and immediate means of information transfer. The best instances for a conference were at time of patient referral, time of discharge to the community, or where the case was complex. General practitioners appreciated access to multiple professionals simultaneously. Workload pressures were a drawback of participation for both GPs and specialists. Palliative care team members thought case conferences gave GPs an appreciation of a team approach, and reduced professional isolation. The usefulness of the case conferences depended on the willingness of the GP to participate. General practitioners would participate again provided they did not have to organise the case conference. Specialist staff were concerned by the financial cost of organising case conferences. DISCUSSION: Case conferences provide useful information exchange between GPs and specialist staff, and are acceptable to both parties. Much depends on the individual GPs attitude toward participation, as well as the timing of the conferences in the course of the patient's illness. Organisation needs to be a task of the specialist units, who would need administrative support to organise them. (author abstract)

A review of patients with advanced cervical cancer presenting to palliative care services at Queen Elizabeth Central Hospital in Blantyre, Malawi

Background Cervical cancer is the commonest cancer affecting women in Malawi, which has the highest rate of this disease in the world. Most cases are diagnosed at an advanced stage. Aim To describe the symptom burden, palliative care interventions, and outcomes of cervical cancer patients who entered care at Tiyanjane Clinic in Blantyre, Malawi, between January and December 2012. Methods We reviewed the case files of 72 patients presenting to our hospital-based palliative care service over one year. Results The mean age was 49.5 years. Twenty-six patients (36%) were HIVpositive and the majority of these (n = 22; 85%) were on antiretroviral medication at presentation to palliative care. Pain (n = 66; 92%), vaginal discharge (n = 44; 61%), and unpleasant odour (n = 37; 51%) were commonly reported. Over a third of patients (n = 26; 36%) reported pain in two or more sites. Fourteen patients (19%) reported vaginal bleeding. Spousal breakdown (through widowhood or divorce) was noted in over half (n = 41; 57%) of all cases. Pain relief was provided to 69 (96%) of the patients (morphine to 40 patients; 56%). Common interventions provided included metronidazole tablets (used vaginally), sanitary items, and counselling. At the end of the study period, 18 patients (25%) were still under the care of palliative services. Conclusions Access to medications such as morphine, metronidazole and tranexamic acid can improve quality of life, even when radiotherapy is limited. Health care teams require necessary skills and training, including how to perform a comprehensive assessment, with an emphasis on the provision of psychosexual counselling, to assist with the complexity of symptoms occurring in this vulnerable group.

The challenge of patients’ unmet palliative care needs in the final stages of chronic illness.

Background: There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim: This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods: The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi’s approach to qualitative analysis. Findings: Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual’s disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients’ future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion: Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual’s holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed. Pa

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

Objective: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes.Design: Pooled analysis of a retrospective cohort study.Setting: Ontario, Canada.Participants: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed).Intervention: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams’ role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day.Main outcome measures: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital.Results: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52).Conclusions: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative care.

The use of anticholinergic agents to treat excessive oropharyngeal and tracheal secretions in palliative care

Palliative care involves a multi-professional team approach to the provision of active, holistic care for patients and their families when the patient's disease is no longer responsive to curative treatment. Patient care encompasses medical and pharmacological intervention for symptom control, together with psychological, spiritual and social support for patients and families. Care is provided by teams in hospice, hospital or community environments. Although traditionally associated with providing care for cancer patients, palliative care services are increasingly providing for patients with non-malignant disease. Symptoms commonly associated with terminal phase of disease include pain, nausea, agitation, respiratory symptoms and general fatigue. During the last few days of life, patients may become weak, resulting in difficulty taking oral medication and have periods of unconsciousness. Some patients may require drug administration via subcutaneous infusion. A proportion of patients may develop difficulty clearing respiratory secretions causing a characteristic ‘death rattle’, which although not generally considered to be distressing for the patient, is often treated with a variety of anticholinergic drugs in an attempt to reduce the ‘noisy breathing’ for the benefit of relatives and others who may be closely associated with the patient.This study examined treatment of death rattle in two Hospices focusing on objective and subjective outcome measures in order to determine the efficacy of anticholinergic regimens in current use. Qualitative methods were employed to elicit attitudes of professionals and carers working closely with the patient. The number of patients recruited and monitored were small, many confounding factors were identified which questioned firstly the clinical rationale for administering anticholinergic drugs routinely to treat death rattle and secondly, the ethics of administering drug regimens to patients to treat death rattle with the primary aim of relieving distress for others. Ethnical issues, including those of consent are discussed in relation to their impact on the methodology of end of life studies in medicines management in palliative care.

Using videotelephony to support paediatric oncology-related palliative care in the home : from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours ‘on-call’ service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation