RESUMEN
PURPOSE: The Kennedy report into the actions of the disgraced Breast Surgeon, Paterson focussed on issues of informed consent for mastectomy, management of surgical margins and raised concerns about local recurrence rates and the increasing emphasis on cosmesis after mastectomy for breast cancer. This article assesses whether Kennedy's recommendations apply to the UK as a whole and how to address these issues. New GMC advice on consent and newer nonevidenced innovations in immediate reconstruction have altered the level of informed consent required. Patients deserve a better understanding of the issues of oncological versus cosmetic outcomes on which to base their decisions. Involvement of the whole multidisciplinary team including Oncologists is necessary in surgical planning. Failure to obtain clear microscopic margins at mastectomy leads to an increased local recurrence, yet has received little attention in the UK. Whereas, other countries have used surgical quality assurance audits to reduce local recurrence; local recurrence rates are not available and the extent of variation across the UK in margin involvement after surgery, its management and relationship to local recurrence needs auditing prospectively to reduce unnecessary morbidity. To reassure public, patients and the NHS management, an accreditation system with more rigour than NHSBSP QA and peer review is now required. Resource and efforts to support its introduction will be necessary from the Royal College of Surgeons and the Association of Breast Surgeons. New innovations require careful evaluation before their backdoor introduction to the NHS. Private Hospitals need to have the same standards imposed.
Asunto(s)
Neoplasias de la Mama/cirugía , Mala Praxis , Márgenes de Escisión , Mastectomía/ética , Mastectomía/normas , Garantía de la Calidad de Atención de Salud , Neoplasias de la Mama/patología , Femenino , HumanosRESUMEN
PURPOSE: Many studies have explored women's reasons for choosing or declining a particular type of breast reconstruction (BR) following mastectomy for breast cancer. This systematic review synthesises women's reasons for choosing a range of BR options, including no BR, in different settings and across time. METHODS: Thirteen databases were systematically searched, with 30 studies (4269 participants), meeting the selection criteria. Information on study aim and time frame, participation rate, design/methods, limitations/bias, reasons and conclusions, as well as participant clinical and demographic information, was reported. An overall quality score was generated for each study. Reasons were grouped into eight domains. RESULTS: While study methodology and results were heterogeneous, all reported reasons were covered by the eight domains: Feeling/looking normal; Feeling/looking good; Being practical; Influence of others; Relationship expectations; Fear; Timing; and Unnecessary. We found a strong consistency in reasons across studies, ranging from 52% of relevant publications citing relationship expectations as a reason for choosing BR, up to 91% citing fear as a reason for delaying or declining BR. Major thematic findings were a lack of adequate information about BR, lack of genuine choice for women and additional access limitations due to health system barriers. CONCLUSIONS: Understanding women's reasons for wanting or not wanting BR can assist clinicians to help women make choices most aligned with their individual values and needs. Our thematic findings have equity implications and illustrate the need for surgeons to discuss all clinically appropriate BR options with mastectomy patients, even if some options are not available locally.
Asunto(s)
Conducta de Elección/ética , Toma de Decisiones/ética , Mamoplastia/ética , Mastectomía/ética , Calidad de Vida/psicología , Femenino , Humanos , Mamoplastia/métodos , Mastectomía/métodosRESUMEN
In 2006 a case report was published about a 6-year-old girl, Ashley, who has profound developmental disabilities and was treated with oestrogen patches to limit her final height, along with a hysterectomy and the removal of her breast buds. Ashley's parents claimed that attenuating her growth would make it possible for them to lift and move her more easily, facilitating greater involvement in family activities and making routine care more straightforward. The 'Ashley treatment' provoked public comment and academic debate and remains ethically controversial. As more children are being referred for such treatment, there is an urgent need to clarify how clinicians and ethics committees should respond to such requests. The controversy surrounding the Ashley treatment exists, at least in part, because of gaps in the literature, including a lack of empirical data about the outcomes for children who do and do not receive such treatment. However, we suggest in this paper that there is also merit in examining the parental decision-making process itself, and provide empirical data about the reasoning of one set of parents who ultimately chose part of this treatment for their child. Using the interview data, we illuminate some important points regarding how these parents characterise benefits and harms and their responsibilities as surrogate decision-makers. This analysis could inform decision-making about future requests for growth attenuation and might also have wider relevance to healthcare decision-making for children with profound cognitive impairment.
Asunto(s)
Toma de Decisiones/ética , Discapacidades del Desarrollo , Niños con Discapacidad , Ética Médica , Crecimiento/efectos de los fármacos , Hormonas/administración & dosificación , Discapacidad Intelectual , Responsabilidad Parental , Padres , Calidad de Vida , Adulto , Niño , Preescolar , Análisis Ético , Comités de Ética , Femenino , Humanos , Histerectomía/ética , Masculino , Mastectomía/ética , Responsabilidad Parental/psicología , Padres/psicologíaRESUMEN
This paper poses the question, "what are providers' obligations to patients who lie?" This question is explored through the lens of a specific case: a 26-year-old woman who requests prophylactic bilateral mastectomy with reconstruction reports a significant and dramatic family history, but does not want to undergo genetic testing. Using a conversational-style discussion, the case is explored by a breast surgeon, genetic counselor/medical geneticist, clinical psychologist, chair of a hospital ethics committee and director of a clinical ethics consultation service.
Asunto(s)
Neoplasias de la Mama , Decepción , Procedimientos Quirúrgicos Electivos/ética , Ética Médica , Mastectomía/ética , Adulto , Neoplasias de la Mama/prevención & control , Neoplasias de la Mama/psicología , Familia , Femenino , Pruebas Genéticas , HumanosAsunto(s)
Cuidadores , Conflicto de Intereses , Comités de Ética , Consultoría Ética , Atención Domiciliaria de Salud , Discapacidad Intelectual/enfermería , Política Pública/legislación & jurisprudencia , Esterilización Involuntaria/ética , Adulto , Asfixia Neonatal/complicaciones , Tamaño Corporal/efectos de los fármacos , Niño , Defensa del Niño , Toma de Decisiones/ética , Discapacidades del Desarrollo/enfermería , Niños con Discapacidad , Estrógenos/administración & dosificación , Comités de Ética/legislación & jurisprudencia , Femenino , Humanos , Histerectomía/ética , Recién Nacido , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/etiología , Mastectomía/ética , New Jersey , Padres , Pubertad Precoz/prevención & control , Esterilización Involuntaria/legislación & jurisprudenciaAsunto(s)
Cuidadores , Conflicto de Intereses , Toma de Decisiones/ética , Discapacidad Intelectual/enfermería , Obligaciones Morales , Esterilización Involuntaria/ética , Adulto , Tamaño Corporal/efectos de los fármacos , Niño , Defensa del Niño , Discapacidades del Desarrollo/enfermería , Niños con Discapacidad , Estrógenos/administración & dosificación , Comités de Ética , Consultoría Ética , Femenino , Atención Domiciliaria de Salud , Humanos , Histerectomía/ética , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/etiología , Mastectomía/ética , Padres , Pubertad Precoz/prevención & control , Incertidumbre , Argumento RefutableAsunto(s)
Cuidadores , Conflicto de Intereses , Toma de Decisiones/ética , Niños con Discapacidad , Comités de Ética , Discapacidad Intelectual/enfermería , Padres , Esterilización Involuntaria/ética , Decisiones de la Corte Suprema , Adulto , Tamaño Corporal/efectos de los fármacos , Niño , Defensa del Niño , Conducta de Elección/ética , Discapacidades del Desarrollo/enfermería , Estrógenos/administración & dosificación , Comités de Ética/legislación & jurisprudencia , Consultoría Ética , Femenino , Atención Domiciliaria de Salud , Humanos , Histerectomía/ética , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/etiología , Mastectomía/ética , Países Bajos , Pubertad Precoz/prevención & control , Esterilización Involuntaria/legislación & jurisprudencia , Estados UnidosAsunto(s)
Beneficencia , Cuidadores , Defensa del Niño , Niños con Discapacidad , Comités de Ética , Discapacidad Intelectual/enfermería , Esterilización Involuntaria/ética , Adulto , Niño , Conflicto de Intereses , Toma de Decisiones/ética , Discapacidades del Desarrollo/enfermería , Comités de Ética/legislación & jurisprudencia , Consultoría Ética , Femenino , Atención Domiciliaria de Salud , Humanos , Histerectomía/ética , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/etiología , Mastectomía/ética , Padres , Pubertad Precoz/prevención & control , Argumento RefutableAsunto(s)
Estatura , Toma de Decisiones/ética , Discapacidades del Desarrollo/complicaciones , Personas con Discapacidad , Discapacidad Intelectual/complicaciones , Padres , Pubertad Precoz/terapia , Calidad de Vida , Esterilización Involuntaria/ética , Esterilización Involuntaria/legislación & jurisprudencia , Argumento Refutable , Estatura/efectos de los fármacos , Peso Corporal/efectos de los fármacos , Niño , Defensa del Niño , Conducta de Elección/ética , Estrógenos/administración & dosificación , Comités de Ética , Ética Clínica , Femenino , Hospitales Pediátricos/ética , Humanos , Histerectomía/ética , Histerectomía/legislación & jurisprudencia , Mastectomía/ética , Mastectomía/legislación & jurisprudencia , Autonomía Personal , Personeidad , Pronóstico , Pubertad Precoz/complicaciones , Pubertad Precoz/tratamiento farmacológico , Pubertad Precoz/cirugía , Terminología como Asunto , IncertidumbreRESUMEN
The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them.