RESUMO
In aging societies, the last phase of people's lives changes profoundly, challenging traditional care provision in geriatric medicine and palliative care. Both specialties have to collaborate closely and geriatric palliative care (GPC) should be conceptualized as an interdisciplinary field of care and research based on the synergies of the two and an ethics of care.Major challenges characterizing the emerging field of GPC concern (1) the development of methodologically creative and ethically sound research to promote evidence-based care and teaching; (2) the promotion of responsible care and treatment decision making in the face of multiple complicating factors related to decisional capacity, communication and behavioural problems, extended disease trajectories and complex social contexts; (3) the implementation of coordinated, continuous care despite the increasing fragmentation, sectorization and specialization in health care.Exemplary strategies to address these challenges are presented: (1) GPC research could be enhanced by specific funding programs, specific patient registries and anticipatory consent procedures; (2) treatment decision making can be significantly improved using advance care planning programs that include adequate decision aids, including those that address proxies of patient who have lost decisional capacity; (3) care coordination and continuity require multiple approaches, such as care transition programs, electronic solutions, and professionals who act as key integrators.
Assuntos
Tomada de Decisão Clínica/métodos , Geriatria/métodos , Cuidados Paliativos/métodos , Planejamento Antecipado de Cuidados/tendências , Idoso , Atenção à Saúde/métodos , Atenção à Saúde/tendências , Geriatria/tendências , Humanos , Cuidados Paliativos/tendênciasRESUMO
As a result of a literature-based expert process, this review provides an overview about the principles of palliative care for people with advanced dementia that are relevant for clinical practice. In particular, the indications, impact and aims of palliative care for advanced dementia are described. Life-prolonging measures and management of symptoms at the end of life are discussed. Furthermore, the overview focuses on the legal basis of decision making.
Assuntos
Demência , Cuidados Paliativos , Tomada de Decisões , Humanos , Cuidados Paliativos/legislação & jurisprudênciaRESUMO
PURPOSE: Deciding on artificial nutrition and hydration (ANH) at the end of life (EoL) may cause concerns in patients and their family caregivers but there is scarce evidence regarding their preferences. Therefore, the aim of this study was to assess the impact of factors associated with ANH decision making. METHODS: Prospective, Cross-sectional survey. Adult patients admitted to hospital for symptoms of advanced cancer as well as their family caregivers completed a self-administered questionnaire. Items included personal views and concerns about ANH. Family caregivers additionally recorded their preference for their loved one and, if applicable, previous experience with ANH decisions. RESULTS: Thirty-nine out of sixty-five patients and 30/72 relatives responded. Higher age of the patient was significantly correlated with both the patient's and the relative's decision to forgo ANH (Kruskal-Wallis test, p < 0.01). Thirty-nine percent of patients, 37 % of relatives if deciding for themselves, and 24 % of relatives if deciding on behalf of their loved one opted against ANH; 36, 40 and 52 % preferred artificial hydration (AH) only (χ (2) test, p <0.001), while 23, 23 and 24 %, respectively, wished to receive ANH. Patients felt more confident about decisions on artificial nutrition (AN) than caregivers (T test, p < 0.05) and less concerned about adverse effects of forgoing ANH on pain, agitation and sensation of hunger and thirst (χ (2) test, p < 0.05). Satisfaction of patients with communication regarding forgoing ANH (5.0 ± 2.8 on a Likert scale from 0 to 10) correlated with their confidence (Spearman's rho, p < 0.01). A thorough consultation with the attending physician on ANH issues was the favoured source of support for 77 % of patients and 97 % of relatives. A majority of patients considered their relatives' opinion (67 %) and their own advance directives (62 %) as crucial for making ANH decisions, and 46 % of them had such a document completed. CONCLUSION: Cancer patients and their relatives have similar preferences regarding ANH at the EoL, but relatives are reluctant to withhold AH if deciding for their loved one. While patients seem to be confident with ANH decision making, their caregivers may particularly benefit from discussing ANH options to dissipate fears.
Assuntos
Cuidadores/psicologia , Hidratação/psicologia , Neoplasias , Apoio Nutricional , Nutrição Parenteral/psicologia , Assistência Terminal , Planejamento Antecipado de Cuidados , Idoso , Atitude , Estudos Transversais , Tomada de Decisões , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias/patologia , Neoplasias/psicologia , Neoplasias/terapia , Apoio Nutricional/métodos , Apoio Nutricional/psicologia , Preferência do Paciente , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/psicologiaRESUMO
We report on a 32-year-old patient, who developed septic shock, toxic shock-like syndrome, and multiple organ failure following nectrotizing fasciitis. Amputations had to be performed on all extremities. Subsequently, she developed secondary sclerosing cholangitis. Treatment goals had to be reassessed, since long-term survival seemed doubtful and, in the best case, burdened with severe handicap. We discuss the evaluation of the treatment goals, utilizing a structured model of goal-setting. In the first step the treatment goal is identified based on the patient's wishes. This goal's realistic achievability is verified considering scientific evidence and medical experience. The benefit of the aspired goal is set in relation to risks and burden of the necessary treatment measures in a third step. The resulting benefit-risk ratio must be evaluated by the patient or her representative. Treatment goals have to be reevaluated if the assessment of achievability or the benefit-risk ratio are disadvantageous. In this case, the initial therapeutic goal was retained. After an extraordinarily prolonged and complex therapy including reconstructive surgery the patient is now living independently at home.
Assuntos
Amputação Cirúrgica/ética , Estado Terminal/terapia , Tomada de Decisões/ética , Planejamento de Assistência ao Paciente/ética , Relações Médico-Paciente/ética , Procedimentos Cirúrgicos Operatórios/ética , Traumatologia/ética , Adulto , Técnicas de Apoio para a Decisão , Feminino , Alemanha , Humanos , Assistência Centrada no Paciente/éticaRESUMO
The beta-antagonistic agent propranolol is increasingly being used in clinical trials for the prophylaxis and treatment of post-traumatic stress disorder (PTSD). This article discusses the evidence for the effectiveness of propranolol in the prophylaxis and treatment of PTSD and the ethical implications of research on these treatment approaches. The efficacy of a prophylactic or therapeutic use could not be shown during the last decade. Both treatment approaches raise ethical questions that should already be addressed during the clinical trials.
Assuntos
Antagonistas Adrenérgicos beta/uso terapêutico , Ética Médica , Medicina Baseada em Evidências/ética , Propranolol/uso terapêutico , Transtornos de Estresse Pós-Traumáticos/tratamento farmacológico , Transtornos de Estresse Pós-Traumáticos/prevenção & controle , Antagonistas Adrenérgicos beta/efeitos adversos , Animais , Nível de Alerta/efeitos dos fármacos , Terapia Combinada , Modelos Animais de Doenças , Humanos , Consentimento Livre e Esclarecido , Memória Episódica , Propranolol/efeitos adversos , Psicoterapia , Ensaios Clínicos Controlados Aleatórios como Assunto , Medição de Risco , Transtornos de Estresse Pós-Traumáticos/psicologiaRESUMO
Treatment decisions for patients in the vegetative state often have to be based on the patient's best interests, if the patient's will is not known. Physicians are, however, highly uncertain what kind of treatment is in such a difficult situation the patient's best interests. This article presents new insights from neuroscience and shows how treatment decision making should proceed to reach an ethically justified decision. Pivotal elements are a careful diagnosis using validated behavioural scales, an informed judgment about the existence of awareness and sentience, and an early prognostic assessment. As new imaging techniques and treatment options are not yet clinical standard due to low evidence, the best interests have to be judged in the context of uncertainty. The leading question should be whether the preferred treatment goal can be achieved with a realistic probability and a justifiable benefit-harm-ratio. This has to be judged for the individual patient, considering his personality and communicating with the family members. There cannot be a general answer to the question of best interests in the vegetative state, but only an individual answer in shared responsibility and based on the particular features of a special case.
Assuntos
Neurociências/ética , Estado Vegetativo Persistente/terapia , Assistência Terminal/ética , Diretivas Antecipadas , Humanos , Estado Vegetativo Persistente/diagnóstico , PrognósticoRESUMO
This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained, their relevance for medical practice discussed and shortcomings are identified. Finally, the new law is compared with other regulations in the international context. Previously established legal practice in Germany has now become largely confirmed by the new law: An advanced directive must be respected in any decision concerning medical treatment, regardless of the stage of the illness. It can be informally revoked at any time, even with limited decision-making capacity. Nobody may be obliged to issue a directive in any way. Advance directives do not need notarisation or routine updating after certain time intervals. Provided that the patient, who is no longer mentally competent, has issued a lasting power of attorney (Bevollmächtiger), or provided that the patient has been appointed a healthcare proxy by the courts (Betreuer), this authorized surrogate must assert the patient's will. The role of the guardianship court is clarified: it only needs to be involved in cases of disagreement as to the patient's will. The new German law thus combines more legal certainty with a liberal emphasis on patient autonomy and flexible, adaptable regulations.
Assuntos
Diretivas Antecipadas/legislação & jurisprudência , Direitos do Paciente/legislação & jurisprudência , Assistência Terminal/legislação & jurisprudência , Adolescente , Criança , Tomada de Decisões , Alemanha , Humanos , Menores de Idade/legislação & jurisprudência , Autonomia PessoalAssuntos
Ética Médica , Neurologia/ética , Neurociências/ética , Psiquiatria/ética , Alemanha , HumanosAssuntos
Diretivas Antecipadas , Cuidados Paliativos , Adesão a Diretivas Antecipadas , Diretivas Antecipadas/legislação & jurisprudência , Aconselhamento , Tomada de Decisões , Medicina de Família e Comunidade , Alemanha , Humanos , Testamentos Quanto à Vida/legislação & jurisprudência , Relações Médico-PacienteRESUMO
BACKGROUND AND OBJECTIVE: Deciding about treatment goals at the end of life is a frequent and difficult challenge to medical staff. As more health care institutions issue ethico-legal guidelines to their staff the effects of such a guideline should be investigated in a pilot project. PARTICIPANTS AND METHODS: Prospective evaluation study using the pre-post method. Physicians and nurses working in ten intensive care units of a university medical center in Germany answered a specially designed questionnaire before and one year after issuance of the guideline. RESULTS: 197 analyzable answers were obtained from the first (pre-guideline) and 251 from the second (post-guideline) survey (54 % and 58 % response rate, respectively). Initially the clinicians expressed their need for guidelines, advice on ethical problems, and continuing education. One year after introduction of the guideline one third of the clinicians was familiar with the guideline's content and another third was aware of its existence. 90% of those who knew the document welcomed it. Explanation of the legal aspects was seen as its most useful element. The pre- and post-guideline comparison demonstrated that uncertainty in decision making and fear of legal consequences were reduced, while knowledge of legal aspects and the value given to advance directives increased. The residents had derived the greatest benefit. CONCLUSION: By promoting the knowledge of legal aspects and ethical considerations, guidelines given to medical staff can lead to more certainty when making in end of life decision.
Assuntos
Fidelidade a Diretrizes/estatística & dados numéricos , Corpo Clínico Hospitalar/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Cuidados Paliativos/normas , Guias de Prática Clínica como Assunto , Assistência Terminal/normas , Doente Terminal/estatística & dados numéricos , Adolescente , Adulto , Feminino , Alemanha/epidemiologia , Fidelidade a Diretrizes/normas , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Assistência Terminal/estatística & dados numéricos , Adulto JovemRESUMO
In modern medicine, decisions about the kind of treatment at life's end are often inevitable. According to German law, powers of attorney and advance directives can be of help in these decisions. When a patient in a state of competence has issued a lasting power of attorney, there is no need for courts to appoint a proxy, and physicians immediately have a legally empowered decision-maker they can address. According to current German law, advance directives are legally valid and binding expressions of a patient's will. They are, however, more powerful when issued after consultation with a physician. If treatment at life's end no longer complies with the patient's will or loses its medical indication, the goal of treatment should be redirected towards palliation. This implies that life-sustaining treatment may be withdrawn or withheld, which is best accomplished with sensitivity to the needs of patients, relatives, and health care professionals.