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PowerPoint Slides Brazilian Portuguese Translation

Psychosocial Impact of Breast Cancer Hoping and Coping VideoTranscript

Impacto psicossocial do câncer de mama Como manter a esperança e enfrentar o estresse Transcrição do vídeo

Professional Oncology Education Psychosocial Impact of Breast Cancer Hoping and Coping Time: 49:03

Educação profissional em oncologia Impacto psicossocial do câncer de mama Como manter a esperança e enfrentar o estresse Hora: 49:03

Lakshmi Rai Naik, MA, LCSW Assistant Director Department of Social Work The University of Texas MD Anderson Cancer Center

Lakshmi Rai Naik, MA, LCSW Diretora Adjunta Departmento de Assistência Social MD Anderson Cancer Center da Universidade do Texas

Psychosocial Impact of Breast Psychosocial Impact of Breast Psychosocial Impact of Breast Psychosocial Impact of Breast

Cancer Cancer Cancer Cancer ---- Hoping and CopingHoping and CopingHoping and CopingHoping and Coping

Psychosocial Impact Psychosocial Impact

of Breast Cancerof Breast Cancer

Hoping and CopingHoping and Coping

Lakshmi Rai Naik, MA, LCSW

Assistant Director

Department of Social Work

Hi, I am Lakshmi Naik, an Assistant Director in the Department of Social Work at MD Anderson Cancer Center. Today, I will be speaking about the psychosocial impact of breast cancer, hoping and coping.

Olá, sou Lakshmi Naik, Diretora Adjunta do Departamento de Assistência Social do MD Anderson Cancer Center. Hoje vou falar a respeito do impacto psicossocial do câncer de mama, de como manter a esperança e enfrentar o estresse.

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ObjectivesObjectivesObjectivesObjectives

• To understand the psychosocial impact of breast cancer

• To more effectively meet the emotional and

relationship needs of patients with breast cancer by

integrating psychosocial assessments and interventions

as part of the treatment and follow-up process

• To gain a better understanding about the possible

resources among the various professionals and staff

• To increase awareness among medical teams of

the process for assessment, tools used and how

to direct referrals

The objectives of this presentation are: to first understand the psychosocial impact of breast cancer; to more effectively meet the emotional and relationship needs of patients with breast cancer by integrating psychosocial assessments and interventions as part of the treatment and follow-up process; to gain a better understanding about the possible resources among various professionals and staff; and to increase awareness amongst medical teams of the process for assessment, some of the tools we use, and how to direct referrals.

Os objetivos desta apresentação são: em primeiro lugar, entender o impacto psicossocial do câncer de mama visando atender mais eficazmente às necessidades emocionais e de relacionamento das pacientes com câncer de mama ao integrar as avaliações psicossociais e as intervenções como parte do tratamento e do processo de acompanhamento; para adquirir uma melhor compreensão dos possíveis recursos existentes entre os vários profissionais e a equipe e para aumentar a conscientização entre as equipes médicas do processo de avaliação, alguns dos instrumentos que utilizamos e como orientar os encaminhamentos.


Cancer Cancer Cancer Cancer ---- Hoping and CopingHoping and CopingHoping and CopingHoping and CopingMD Anderson Cancer Center Goals and MD Anderson Cancer Center Goals and MD Anderson Cancer Center Goals and MD Anderson Cancer Center Goals and Strategies for Future Achievement Strategies for Future Achievement Strategies for Future Achievement Strategies for Future Achievement 2005200520052005----2010201020102010

• Strategy 1.4: “We will continue to enhance the patient

experience by providing counseling, compassion, and

hope in a supportive environment”

• Vision: “Every patient’s emotional needs are assessed

and identified providing referrals to the appropriate

psychosocial service throughout the entire spectrum of

care at MD Anderson Cancer Center”

According to the MD Anderson Strategic Vision, Strategy 1.4 states, “We will continue to enhance the patient experience by providing counseling, compassion and hope in a supportive environment” by meeting “every patient’s emotional needs that will be assessed and identified, providing referrals to the appropriate psychosocial services throughout the entire spectrum of care at MD Anderson Cancer Center.”

De acordo com a Visão Estratégica do [centro] MD Anderson, a Estratégia 1.4 afirma: “Continuaremos a melhorar a experiência do paciente ao proporcionar aconselhamento, compaixão e esperança num ambiente de apoio” ao atender “às necessidades emocionais de cada paciente que será avaliado e identificado, ao providenciar encaminhamentos aos serviços psicossociais adequados em todo o espectro de cuidados oferecidos no MD Anderson Cancer Center”.

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“I will remember that I do not treat a fever chart,

a cancerous growth, but a sick human being, whose

illness may affect the person’s family and economic

stability. My responsibility includes these related

problems, if I am to care adequately for the sick.”

A modern Hippocratic Oath, written by Louis Lasagna, M.D., 1964

Dr. Louis Lasagna in 1964 stated, “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the patient’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.”

Em 1964, o Dr. Louis Lasagna declarou: “Lembrarei que eu não cuido de um ‘gráfico de febre’ um tumor maligno, mas sim de um ser humano doente cuja doença pode afetar a família e a estabilidade econômica do paciente. Minha responsabilidade inclui esses problemas relacionados, se é que tenho de cuidar adequadamente do doente”.



TreatingTreatingTreatingTreating the Whole Patientthe Whole Patientthe Whole Patientthe Whole Patient

Emotional

Function

Physical

Health

Spirituality

PsychosocialRefers to the social, psychological,

emotional, spiritual, quality of life and

functional aspects of person’s life

And so our goal is to look at the cancer patient in relation with the patient’s environment; treating the whole patient’s physical health, spiritual health, emotional health, psychological functioning in the cultural and social context of his life.

E, por isso, nossa meta é considerar o paciente canceroso em relação ao seu próprio ambiente, tratar integralmente a saúde física, espiritual e emocional e o funcionamento psicológico do paciente no contexto cultural e social da sua vida.

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“Psychosocial health services are psychological and

social services and interventions that enable patients,

their families, and health care providers to optimize

biomedical health care and to manage the

psychological/behavioral and social aspects of illness

and its consequences so as to promote better health.”

IOM Brief Report 2008. Cancer care for the whole patient: Meeting psychosocial health needs.

Definition of Psychosocial Health ServicesDefinition of Psychosocial Health ServicesDefinition of Psychosocial Health ServicesDefinition of Psychosocial Health Services

So, what do we mean and how do we define psychosocial health services? The Institute of Medicine of the United States brought out a report in 2008 titled: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, where they say, “Psychosocial health services are psychological and social services and interventions that enable patients, their families and healthcare providers to optimize biomedical health care and to manage the psychological, behavioral and social aspects of illness and consequences so as to promote better health.”

Então, o que queremos dizer e como definimos os serviços psicossociais na saúde? O Institute of Medicine dos Estados Unidos publicou um relatório em 2008 intitulado: “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs”, [Cuidado oncológico do paciente como um todo: como atender às necessidades psicossociais na saúde] no qual afirmam: “Os serviços de atenção psicossocial à saúde são serviços psicológicos e sociais e intervenções que permitem aos pacientes, suas famílias e profissionais de saúde otimizar a atenção biomédica à saúde e manejar os aspectos psicológicos, comportamentais e sociais da doença e consequências de forma a melhorar a saúde”.



The Challenge and Opportunity The Challenge and Opportunity The Challenge and Opportunity The Challenge and Opportunity

• To understand that psychosocial barriers and emotional health of patients and their family

members are as crucial as their medical

treatment in the cancer journey

So, what is the challenge and opportunity? Our challenge, basic, is to understand that psychosocial barriers and emotional health of patients and their family members are as crucial as their medical treatment in the cancer journey. And so, one cannot happen without the other.

Então, qual é o desafio e a oportunidade? Nosso desafio, basicamente, é entender que as barreiras psicossociais e a saúde emocional dos pacientes e de seus familiares são tão importantes quanto o tratamento médico deles na travessia do câncer. E, por isso, um não pode acontecer sem o outro.

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Meeting the ChallengeMeeting the ChallengeMeeting the ChallengeMeeting the Challenge

• Provide a culture of compassion in which patients’ emotional

concerns related to cancer treatment are acknowledged and

supported by MD Anderson faculty and staff in alignment with

various initiatives like: The Psychosocial Council Initiative, The

Relationship Centered Care Model, The Customer Service

Initiative, The Culture of Caring Initiative, The Cancer

Survivorship Initiative

• Increase knowledge about the various professional

psychosocial resources available to support patients and

their family members within MD Anderson

• Provide timely referrals to psychosocial professionals

so that patients and family members may access appropriate

support quickly

How do we meet this challenge? We meet this challenge by providing a culture of compassion in which every patient’s emotional concerns related to treatment are acknowledged and supported by everyone in the institution. We have started several initiatives to assist with this: The Psychosocial Council, The Relationship Centered Care Model, The Customer Service Initiative, The Culture of Caring, and The Cancer Survivorship Initiative. To also increase the knowledge about various professional psychosocial resources within the institution; a lot of times there are a lot services that happen within an institution, but professionals, the physicians, the nurses, the medical teams, are not always aware of these supportive services and how patients can be connected to them. Providing timely referrals to these psychosocial professionals, so an oncologist is looking at a patient, looking at the disease status, looking at the chemotherapy to be started, the patient is in great pain, the patient has a lot of fatigue, has nausea, has vomiting. A lot of these problems may be addressed right away, but the patient’s other problems, which may include emotional pain, the fear, the anxiety, the panic, the family caregiver issues, the financial, the social, and the cultural context, are not always specifically addressed.

Como vencemos esse desafio? Vencemos esse desafio ao oferecer uma cultura de compaixão na qual os problemas emocionais de cada paciente relacionados ao tratamento são reconhecidos e respaldados por todos na instituição. Iniciámos várias iniciativas para auxiliar nesse processo: O Psychosocial Council [Conselho Psicossocial], o Relationship Centered Care Model [Modelo de cuidados centrados no relacionamento], a Customer Service Initiative [Iniciativa de atenção ao cliente], a Culture of Caring [Cultura de solidariedade] e a Cancer Survivorship Initiative [Iniciativa de sobrevivência ao câncer]. Também para aumentar o conhecimento sobre vários recursos psicossociais profissionais dentro da instituição; muitas vezes, existem muitos recursos dentro de uma instituição, mas nem sempre os profissionais, os médicos, os enfermeiros, as equipes médicas têm conhecimento desses serviços de apoio e como os pacientes podem ter acesso a eles. Ao oferecer encaminhamentos oportunos a estes profissionais de psicossociologia, um oncologista examina uma paciente, analisa o estado da doença, a quimioterapia a ser iniciada, a paciente sente muita dor, sente muito fadiga, tem náusea, tem vômito. Muitos desses problemas podem ser resolvidos imediatamente, mas os outros problemas da paciente, entre os quais se incluiriam a dor emocional, o medo, a ansiedade, o pânico, os problemas com a família do cuidador, o contexto financeiro, social e cultural, nem sempre são especificamente abordados.

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Framework for Care Framework for Care Framework for Care Framework for Care

• Communication• Education• Research

• Identify• Link• Support• Coordinate• Follow up

• Staffing • Response• Delivery

And so, the framework of our care for addressing the psychosocial aspects of a patient’s care are, basically, to identify, to assess: what are the distress points and levels of concerns for these patients? How do we link these patients with services? How do we support them? How do we coordinate this? And how do we follow? Most essential elements, communication, education, and research. And more importantly, we must be able to match these with adequate staffing, immediate response, and effective delivery.

Então, a estrutura da nossa atenção que visa contemplar os aspectos psicossociais no cuidado da paciente é, basicamente, identificar, avaliar: quais são os aspectos de angústia e sofrimento e os níveis de preocupação dessas pacientes? Como unimos essas pacientes aos serviços? Como podemos apoiá-las? Como coordenamos isso? E como acompanhamos? Os elementos mais essenciais: comunicação, educação e pesquisa. E, mais importante ainda, devemos poder combiná-los com uma equipe adequada, uma resposta imediata e um resultado eficaz.



Process Framework Process Framework Process Framework Process Framework

Efficacy defined by

the balance between:

Need Response

Service Delivery

Expectation Experience

• Need

• Service

• Expectation

High Quality Care

• Response

• Delivery

• Experience

This process framework must be so well synchronized to bring out the most effective outcomes. This efficacy of balance between need and response; between service and delivery; expectation and experience, is what will define the quality of our care to our cancer patients.

A estrutura deste processo deve ser tão bem sincronizada que traga à luz os desfechos mais eficazes. Essa eficácia do equilíbrio entre a necessidade e a resposta, entre o serviço e o resultado, a expectativa e a experiência, é o que irá definir a qualidade do cuidado que prestamos às nossas pacientes com câncer.

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Continuum of CareContinuum of CareContinuum of CareContinuum of Care

Psychosocial care of cancer patients should be an integral

part of their medical care and available at all stages of their

diagnosis, treatment and survivorship and must occur in a seamless continuous manner.

• New patient diagnosed

• Treatment

• Remission

• Recurrence

• Progressive

• Advanced disease

The continuum of care is very long with cancer patients and their treatment. From the point a patient is diagnosed to the patient’s treatments, or when a patient goes into remission, comes back with remission sometimes, the disease gets progressive or if the patient is in the end stages of disease. At each stage, the psychosocial aspect of the patient’s care must be a part of their medical care for us to have the most effective outcomes.

Todo o processo do cuidado com pacientes com câncer e seu tratamento é muito longo. Desde o momento em que a paciente é diagnosticada até os seus tratamentos, ou quando uma paciente entra em remissão, às vezes volta com remissão, há progressão da doença ou se a paciente estiver nos estágios finais da doença. Em cada estágio, o aspecto psicossocial da atenção à paciente deve ser uma parte da sua atenção médica para que possamos obter os desfechos mais eficazes.



Walk the TalkWalk the TalkWalk the TalkWalk the Talk

We need to walk the talk and we know that each and every stage has fear, anxiety, anger. There are financial issues. There are social issues. There are relationship issues. There are caregiver fatigue issues, caregiver burden issues. There is physical pain. There is emotional pain. And not one stage is immune to this fear and anxiety. At each point, we have different levels of distress.

Precisamos pôr em prática o que defendemos na teoria, e sabemos que em cada um dos estágios há medo, ansiedade, raiva. Há questões financeiras. Há questões sociais. Há questões de relacionamento. Há questões de fadiga do cuidador, questões de obrigações do cuidador. Há dor física. Há dor emocional. E nenhum estágio é imune à dor e à ansiedade. Em cada ponto, temos diferentes níveis de angústia e sofrimento.

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So Why ? So Why ? So Why ? So Why ?

• Frequent crisis intervention

• Lower compliance

• Treatment delays

• Poorer outcomes

• Increased staff time

• Higher costs

• Less able to use resources

• Poorer quality of life

Psychosocial Barriers Lead to:

So, why are we so interested in looking at the psychosocial impact of cancer on breast cancer patients? Because we know that barriers lead to frequent crises. There is panic in the system. There is panic in the patient’s family. There is panic with the patient’s psyche. There is lower compliance. The patient does not want to go for treatment because he is afraid of going through an MRI procedure. He says, “I would rather die than go through an MRI”. There are treatment dealings because there has not been sufficient communication. Or the patient has not understood, or the patient does not have the means to get to that test or treatment. This leads to poorer outcomes, increased staff time, higher costs to the system. The patients are less able to use resources and there is poorer quality of life.

Então, por que estamos tão interessados em analisar o impacto psicossocial do câncer nas pacientes com câncer de mama? Porque sabemos que as barreiras levam a crises frequentes. Há pânico no sistema. Há pânico na família da paciente. Há pânico na psique da paciente. Há menos adesão ao tratamento. A paciente não quer ir [às sessões] de tratamento porque tem medo de passar por um procedimento de ressonância magnética. Ela diz: “Prefiro morrer a passar por uma ressonância magnética”. Há negociações de tratamentos porque não tem havido comunicação suficiente. Ou a paciente não entendeu ou não tem meios para fazer o teste ou o tratamento. Isso dá origem a desfechos mais ineficazes, aumenta o tempo da equipe, maiores custos para o sistema. As pacientes têm menos capacidade de utilizar os recursos e a qualidade de vida é mais baixa.



Cancer Cancer Cancer Cancer •••• Psychosocial Functioning Psychosocial Functioning Psychosocial Functioning Psychosocial Functioning •••• Quality of LifeQuality of LifeQuality of LifeQuality of Life

Cancer patients with serious depression are more likely:

•To be non-compliant with cancer therapy, more likely to have cancer treatments delayed or reduced

•To eat and sleep less and have poor self-care

•To be less vigilant about disease symptoms and less able to use proactively those resources that might bring

health improvements

And so, for us, it is so important to know that cancer patients with different levels of emotional distress will show symptoms and behavior problems that impact their quality of life and their psychosocial function. They eat less, they sleep less, they are noncompliant and they are less vigilant about their disease systems.

Então, para nós, é muito importante saber que as pacientes com câncer com diferentes níveis de sofrimento emocional manifestarão sintomas e problemas de comportamento que impactam a sua qualidade de vida e sua função psicossocial. Elas comem menos, dormem menos, não aderem ao tratamento e prestam menos atenção aos sintomas da doença.

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DepressionDepressionDepressionDepression

• Patients with compromised immune systems due

to depression have been shown to have higher

incidence rates of cancerFord S et al. Br J Cancer 1994 70(4):767, Holland JC and Rowland J, Handbook of Psycho-oncology, New York, Oxford University Press, 1989, Brewin C et al. Psych. Med. 1998 28(1): 219

• U.S. National Cancer Institute estimates that 25%

of cancer patients experience major depression

• “Depression and anxiety are highly under-diagnosed

in cancer patients”

Patients with compromised immune systems due to depression have been shown to have higher incidence rates of cancer. And this we know from a study by Jimmie Holland and Rowland in 1989. U.S. National Cancer Institute estimates that 25% of cancer patients experience major depression. Now this is a pretty common statistic and we do know that depression and anxiety are highly underdiagnosed in cancer patients.

Foi observado que pacientes que têm o sistema imunológico comprometido por causa de depressão, têm maiores taxas de incidência de câncer. E isso sabemos de um estudo realizado por Jimmie Holland e Rowland, em 1989. O National Cancer Institute dos Estados Unidos estima que 25% dos pacientes com câncer sofrem de depressão profunda. Bem, esse é um dado estadístico muito comum e sabemos que a depressão e a ansiedade são altamente subdiagnosticadas em pacientes com câncer.



Impact on Breast CanceImpact on Breast CanceImpact on Breast CanceImpact on Breast Cancerrrr

• In a study by Spiegle et al., 86 patients with metastatic breast cancer were randomized to receive either routine oncologic care, alone, or routine oncologic care plus one year of weekly supportive group therapy and self hypnosis

• Survival from the time of randomization was significantly higher in the intervention group (36.6 months compared to 18.9 months)

• A number of studies also draw attention to the high levels of distress beyond the period of initial diagnosis

Ganz PA et al. Cancer 1992 69(7):1729

In a study by Spiegle et al., on 86 patients with metastatic breast cancer who were randomized to receive either routine oncology care, by itself, or routine oncology care with attendance to support groups on a weekly basis for 12 months. The survival time of randomization was significantly higher in the intervention group by almost 100%. That is phenomenal. A number of studies also draw attention to the high levels of distress beyond the period of initial diagnosis.

Em um estudo realizado por Spiegle et al., 86 pacientes com câncer de mama metastático foram distribuídas aleatoriamente para receber somente atenção oncológica de rotina, ou atenção oncológica de rotina mais o comparecimento a grupos de apoio semanais por 12 meses. O tempo de sobrevida da randomização foi significativamente maior no grupo com intervenção em quase 100%. Isso é extraordinário. Diversos estudos também chamaram a atenção pelos altos níveis de angústia e sofrimento além do período do diagnóstico inicial.

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• Goldberg et al. found high levels of anxiety and depression

in approximately 25% of breast cancer patients at 12 months

following initial diagnosis

• There is evidence that this level can persist for up to two years

or more after diagnosis. Levels of depression and anxiety can

also be higher in those patients with advanced disease, with

pain being an important contributory factor

• Pain and depression impact each other closely and

management of one without the other will not be most effectiveSpecial Section: Cancer, 568 Current Science, Vol. 81, No. 5, 10 September 2001

Impact on Breast CanceImpact on Breast CanceImpact on Breast CanceImpact on Breast Cancerrrr (continued)(continued)(continued)(continued)

Goldberg JA et al. EurJ Surg Oncol. 1992 18(4):327

Ganz PA et al. Cancer 1992 69(7):1729 ; Maunsell E et al. Cancer 1992 70(1):120

And we know that, again, at least 25% of patients feel these symptoms even 12 months after initial diagnosis. And we know that this can extend up to 2 years or even more depending on the traumatic stress disorder that this diagnosis and treatment has imposed on the cancer patients. Again, pain and depression impact each other closely and management of one without the other will not be most effective.

E, por outro lado, sabemos que no mínimo 25% das pacientes sentem esses sintomas, mesmo 12 meses depois do diagnóstico inicial. E sabemos que isso pode se estender até por dois anos ou ainda mais dependendo do transtorno de estresse traumático que este diagnóstico e o tratamento impuseram nas pacientes com câncer. Por outro lado, a dor e a depressão impactam uma à outra intimamente, e o controle de uma sem o da outra não será o mais eficaz.



Breast Cancer Incidence Breast Cancer Incidence Breast Cancer Incidence Breast Cancer Incidence

• As of 2008, there are about 2.5 million women in

the United States who have survived breast cancer

• Breast cancer incidence in women in the United

States is 1 in 8 (about 13%)

• About 40,170 women in the United States were

expected to die in 2009 from breast cancer, though

death rates have been decreasing since 1990. These

decreases are thought to be the result of treatment

advances, earlier detection through screening, and

increased awareness

As of 2008, there are about 2.5 million women in the United States who have survived breast cancer. And 1 in 8, about 13%, have breast cancer in the United States. About 40,000 women in the United States were expected to die in 2009 from breast cancer, although the death rates have decreased considerably since 1990. These decreases are thought to be the result of treatment advances, earlier detection through screening and increased awareness.

Desde 2008, existem cerca de 2,5 milhões de mulheres nos Estados Unidos que sobreviveram ao câncer de mama. E, nos Estados Unidos, uma em oito, cerca de 13%, têm câncer de mama. Espera-se que em 2009, 40.000 mulheres nos Estados Unidos morram de câncer de mama, embora as taxas de mortalidade tenham diminuído consideravelmente desde 1990. Acredita-se que essas quedas se devam aos avanços nos tratamentos, detecção precoce por meio de rastreamento e maior conscientização.

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Emotional PainEmotional PainEmotional PainEmotional Pain

• The intensity and duration of a patient’s “emotional”discomfort or pain can be sometimes “more crippling”

than the disease itself

• Patients/families have multiple stressors at different stages of their disease, the intensity of which can

change dramatically at different points in the journey

• Emotional comfort is a vital piece of the treatment and “significantly enhances a patient’s overall care”

And again, when we talk about awareness, we want to say awareness amongst the patients, the families, the medical staff, the physicians, the nurses, the social workers, the case managers, the business center people, patient advocates. All of these people being able to work as equal partners in the single goal of providing the most optimum quality of life for our patients. The intensity and duration of a patient’s emotional discomfort of pain can be sometimes more crippling than the disease itself. I have had patients who have felt this pain, this emotional pain that does not allow them to think clearly; does not allow them to want to even go through this treatment anymore even though we have a highly optimistic view of a cure of treatment for their disease. And patients will sometimes say, “Forget it; I do not want to go through this.” And that comes from a sense of deep emotional pain, which has crippled them and we need to do something about it as soon as possible. Patients and families have multiple stressors at different stages of their disease. The intensity can change dramatically at different points in the journey depending on what triggers this patient’s state of mind, and fear or anxiety. There are patients that are terrified by MRI images, patients that are terrified by just seeing the prick of a needle or looking at bandages or smells even. So, emotional comfort is a vital, vital piece of the treatment and significantly enhances a patient’s overall care and also the family’s overall care.

Além do mais, quando falamos sobre conscientização, queremos dizer conscientização entre as pacientes, as famílias, a equipe médica, os médicos, os enfermeiros, os assistentes sociais, os gerenciadores de caso (case managers), o pessoal do centro administrativo, os defensores das pacientes. Todas essas pessoas sendo capazes de trabalhar como parceiros em pé de igualdade com a meta única de oferecer a qualidade de vida mais adequada para nossas pacientes. A intensidade e duração do desconforto emocional da dor da paciente, às vezes, pode ser mais incapacitante do que a própria doença. Eu tive pacientes que sentiram essa dor, essa dor emocional que não lhes permite pensar com clareza; não lhes permite nem sequer querer passar por esse tratamento nunca mais, embora tenhamos uma visão altamente otimista de cura do tratamento para a sua doença. E, às vezes, as pacientes dizem: “Esqueça, não quero passar por isto”. E isso surge de uma profunda dor emocional que as incapacitou, e precisamos fazer alguma coisa a respeito o quanto antes. Pacientes e familiares são acometidos por diversos fatores de estresse nos diferentes estágios da doença. A intensidade pode se modificar drasticamente nos diferentes pontos da jornada, dependendo do que desencadeia o estado mental, e o medo ou a ansiedade da paciente Algumas pacientes sentem pavor das imagens por ressonância magnética, outras se apavoram só de ver a fincada de uma agulha ou de ver as vendas ou mesmo de cheiros. Então, o conforto emocional é vital, é peça vital do tratamento e melhora significativamente a atenção geral da paciente e também a atenção geral da família.

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Cancer Cancer Cancer Cancer ---- Hoping and CopingHoping and CopingHoping and CopingHoping and CopingHoping and Coping Hoping and Coping Hoping and Coping Hoping and Coping ---- A Dynamic Paradigm A Dynamic Paradigm A Dynamic Paradigm A Dynamic Paradigm Cure Cure Cure Cure •••• Respect Respect Respect Respect •••• Compassion Compassion Compassion Compassion •••• TimeTimeTimeTime

• Medical treatment/physical care

• Emotional comfort

• Communication both with patient and providers, accurate

and timely information, education about

care plan, resources and long term implications

• Comprehensive plan of care

• Emotional support and alleviation of fears and anxiety

• Transition and continuity of care

• Coordination of care and integration of services

within an institutional setting

So, while we are hoping and coping, what are we doing? What is the paradigm for helping patients hope and cope while they are on this journey? Their emotional comfort, the communication to the patient between the providers. So we have a physician who has seen a patient; he has done his notes on the chart, he has talked to the patient briefly, given some details, but the patient has not completely absorbed this. Patient is still very upset, but afraid to talk to the physician. He has gone home and now he has become suicidal. What do we do in situations like this? What is the barrier that came up here? How do we make sure that we have provided the patient with the best possible information, in the best possible way, in a compassionate understanding way, where the patient is able to cope with that information? And if not at that time, what other kind of support system am I building for him to stand up strong? To be able to provide a comprehensive plan of care, sometimes we give them plans of care in bits and pieces. The next step is you go and you get a bone marrow aspiration. So, he goes to bone marrow aspiration. The next step is you come in and get a CT scan. These are bits and pieces of information that don’t not bode well, or help the patient to understand the complete plan. If a patient knows what the complete plan is, it is much easier for the patient to emotionally prepare himself for the next step; transition and continuity of care and the coordination of care and integration of services within an institutional setting.

Enquanto mantemos a esperança e enfrentamos o estresse, o que fazemos? Qual o paradigma de ajudar as pacientes a manter a esperança e a enfrentar o estresse enquanto estiverem nessa travessia? Seu conforto emocional, a comunicação à paciente entre os profissionais de saúde. Temos um médico que examinou um paciente, anotou tudo no prontuário, conversou rapidamente com o paciente, deu alguns detalhes, mas ele não assimilou tudo isso. O paciente está ainda muito aborrecido, mas com medo de falar com o médico. Ele foi para casa e, agora, ele tornou-se suicida. O que fazemos numa situação como essa? Qual a barreira que surgiu aqui? Como podemos ter certeza de que oferecemos a melhor informação possível ao paciente, da melhor forma possível, com compaixão e compreensão, num lugar onde o paciente pode lidar com essa informação? E se não for nessa hora, que outro tipo de sistema de apoio construo para que ele saia fortalecido? Para poder oferecer um plano de atenção integral, às vezes, entregamos os planos de atenção em bocados. O passo seguinte é ir e fazer uma aspiração de medula óssea. Então, ele vai a uma aspiração de medula óssea. O passo seguinte é vir e fazer uma tomografia computadorizada. Esses são bocados de informações que não são um bom presságio nem ajudam o paciente a entender todo o plano. Se o paciente conhece todo o plano, é muito mais fácil para ele se preparar emocionalmente para a próxima etapa: transição e continuidade da atenção e coordenação da atenção e integração dos serviços dentro do ambiente institucional.

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Coping with Coping with Coping with Coping with

• Pain, swelling, body changes

• Feeling overwhelmed

• Anxious

• Fearful

• Relationships

• Life changes

• Getting back to “normal”

How do people really cope ?

- I just can’t take this constant stress anymore not knowing

what is going to happen.

- I am going to shoot that doctor. He told me I was going to die!

- I am going to beat this. I am NOT going to die.

So the coordination outside of the institution is different than the coordination within the institution. Has the physician called the PA? Has the physician called the social worker? Has the PA talked with the pharmacist? Has the nurse spoken with the nutritionist? This is coordination of care where everybody is looking at every aspect of the patient’s care. The pain, the feeling overwhelmed, anxiety, fear, life changes and getting back to normal. How do people really cope? “I just cannot take this constant stress anymore not knowing what is going to happen”. There is this constant sense of dread, so how do I stop this dread for my patient? “I am going to shoot that doctor, he told me I was going to die”. Now what brings about a response like this? When a physician has with all good intentions provided the patient with the most correct information as a scientist, and still faces a response that can be as violent and aggressive as this. The reason is that we did not quite understand or gauge the patient’s emotional state at that point. And to be able to break that piece of news, or present that piece of news in a different manner, is the skill we need to pick up. “I am going to beat this; I am not going to die”. So, we have a lot of patients who want to fight, who want to beat it, who are hopeful that they are going to live forever.

A coordenação fora da instituição é diferente da coordenação dentro dela. O médico ligou para o auxiliar médico? O médico ligou para o assistente social? O auxiliar médico falou com o farmacêutico? O enfermeiro falou com o nutricionista? Isso é coordenação da atenção, em que todo o mundo cuida de todos os aspectos da atenção ao paciente. A dor, sentir-se assoberbado, a ansiedade, o medo, as mudanças na vida e voltar ao normal. Como as pessoas podem realmente enfrentar? “Eu simplesmente não aguento mais esse estresse contínuo sem saber o que vai acontecer”. Há esta apreensão contínua, então, como posso parar esta apreensão de meu paciente? “Vou matar aquele médico, ele me disse que eu ia morrer”. O que motiva uma resposta como essa? Quando um médico oferece com todas as boas intenções ao paciente e com as informações mais corretas como cientista que é, e ainda enfrenta uma resposta que pode ser tão violenta e agressiva quanto essa. A razão é que não entendemos muito bem ou não medimos o estado emocional do paciente naquele momento. E para poder anunciar aquela notícia ou apresentar aquela notícia de maneira diferente, essa é uma habilidade que temos de aprender. “Eu vou vencer isto; eu não vou morrer”. Temos muitos pacientes que querem lutar, que querem vencer a doença, que têm esperanças de que vão viver para sempre.

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• How do I tell my daughter I’m sick?

• Where can I talk to other cancer patients

about treatment?

• Are the changes in my sex drive normal?

• What if I can’t afford the expenses?

• What things should I tell my family?

How do we manage this expectation? How do we take them along on the continuum from the best to the worst, and from the worst to the best? Patients have questions all the time. “How do I tell my daughter I am sick?” “Where can I talk to other cancer patients about treatment?” “Are the changes in my sex drive normal?” Now how many patients would talk to you about this on a daily basis unless you really ask them? And sometimes, even if you ask them, they are not going to tell you. So, what kind of skills do we need to get an understanding for some of these issues and are these issues important? Absolutely, because that impacts the patient’s quality of life. “What if I cannot afford these expenses?” “What things should I tell my family?”

Como controlamos essas expectativas? Como os conduzimos ao longo de todo o processo, do melhor ao pior e do pior ao melhor? Os pacientes sempre têm perguntas. “Como digo para a minha filha que estou doente?” “Onde posso falar sobre tratamentos com outros pacientes com câncer?” “São normais as mudanças na minha libido?” Quantos pacientes falariam com você sobre isso regularmente a menos que você lhes perguntasse? E, às vezes, mesmo perguntando, eles não vão lhe dizer. Que tipo de habilidades precisamos para entender alguns desses problemas e, são importantes esses problemas? Certamente, porque impacta a qualidade de vida do paciente. “E se não posso pagar esses gastos?” “Que coisas devo dizer à minha família?”



• How do I make sure I won’t be kept alive by a machine?

• Am I supposed to feel sad all that time?

• Why do my husband and I fight so much now?

• What if someone is abusing me?

• What does hospice mean?

• What if I lose my job?

“How can I tell my family?” “I do not want my wife going crazy and jumping off the roof because I have this diagnosis because that is not going to help.” “How can I manage this?” “How do I make sure I will not be kept alive by a machine?” “Am I supposed to feel sad all the time?” “Why do my husband and I fight so much?” “Our relationships have changed and some things have gotten worse.” What if someone is abusing? “What does hospice mean?” “I do not have anything like hospice in my country or in the city where I live.” “Is that another hospital?” “Is that another service?” “What if I lose my job?”

“Como posso contar à minha família?” “Não quero que minha mulher enlouqueça e pule do telhado porque tenho este diagnóstico porque não vai ajudar”. “Como posso controlar isto?” “Como posso ter certeza de que não vão me manter vivo por meio de uma máquina?” “Devo me sentir triste todo o tempo?” “Por que meu marido e eu brigamos tanto?” “Nossos relacionamentos mudaram e algumas coisas pioraram.” E se alguém é abusivo? “O que significa ‘centro para atendimento de pacientes terminais’?” “Não tem nada parecido com centro para atendimento de pacientes terminais em meu país ou na cidade onde moro”. “Isso é outro hospital?” “Isso é outro serviço?” “E se eu perder o meu emprego?”

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Hoping to Hoping to Hoping to Hoping to

• Feel better

• Focus on possibilities

• Lead a healthier meaningful life

• Strengthen body and mind

• Take charge

• Build connections with survivors, counselors

• Set new goals

• Adjust to a new normal

“What are my alternatives to manage this disease” and “what am I hoping all the time?” The patient is saying, “I hope to feel better” because most patients come with a hope that they will be cured. And again it is up to the professional to be able to navigate through this and manage that expectation in a very tactful manner, where we are looking at cancer as a more chronic illness, where there is no cure, so to speak, for diseases like diabetes, And so cancer, in much the same way, may be a long-term phenomenon with no actual cure, but maybe remission, maybe stabilization of disease. And maybe we can say that this disease will never come back for the next 10 to 15 to 20 years or over the lifetime. But again, it is about managing expectations where patients are able to move along the continuum of care with much more comfort. To focus on the possibilities of what can happen in a positive direction. Lead a healthier, more meaningful life, even in the face of a terminal nature of any type of disease, if it is terminal. Strengthen body and mind. Take charge. Help the patient if the patient wants to take charge, be in control. And so, always being told do this, do not do that, eat this, must have this, can wear a patient down and make him feel like he has lost control. Build connections with survivors, counselors, they want to set new goals, you want to help them set new goals. “Okay, so I was a marathon runner yesterday and I cannot do that anymore, but what is my next alternative. Maybe I can start painting. Maybe I can start cooking lessons.” There are so many different alternatives one can look at and there is such a thing as creative problem- solving, which most patients themselves are able to come up with the solutions as long as they know they have the support and the resource, And hoping to adjust to a new normal.

“Quais minhas opções para controlar esta doença” e “o que espero a todo momento?” O paciente diz: “Espero me sentir melhor” porque a maioria dos pacientes chegam com esperança de que vão ser curados. Porém, depende do profissional de poder atravessar tudo isso e controlar as expectativas de maneira muito diplomática, numa situação em que vemos o câncer mais como uma doença crônica, em que não há cura, por assim dizer, para doenças como o diabetes. E o câncer também, de maneira semelhante, pode constituir um fenômeno de longo prazo sem cura real, mas talvez com remissão, talvez com estabilização da doença. E talvez possamos dizer que esta doença não voltará mais pelos próximos 10 a 15 a 20 anos ou pelo resto da vida. Mas, por outro lado, tem a ver com o controle das expectativas de forma que os pacientes possam acompanhar todo o processo de atenção com muito mais conforto. Para se concentrar nas possibilidades do que possa acontecer para o lado positivo. Levar uma vida mais saudável e significativa, mesmo perante a natureza terminal de qualquer tipo de doença, se for terminal. Fortalecer o corpo e a mente. Tomar as rédeas. Ajudar o paciente se ele quiser tomar as rédeas, manter o controle. Então, sempre tendo alguém dizendo "faz isto", "não faz aquilo", “coma isto”, “tem que ter isto”, pode desgastar o paciente e fazê-lo sentir-se como se tivesse perdido o controle. Crie vínculos com sobreviventes, conselheiros, eles querem estabelecer novas metas, você quer ajudá-los a estabelecer novas metas. “Está bem, ontem, eu corria maratonas e não posso mais fazer isso, mas qual é a minha próxima alternativa. Talvez possa começar a pintar. Talvez possa começar a estudar arte culinária. Há tantas opções diferentes que

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podemos olhar e há uma coisa chamada solução criativa de problemas, que a maioria dos pacientes por si mesmos são capazes de apresentar as soluções sempre e quando saibam que contam com o apoio e o recurso, e esperando se ajustarem a um novo estado de normalidade.



Hoping to Hoping to Hoping to Hoping to

How do people really cope?

• I will do what it takes to get well but I will also plan

for the worst.

• I am going to try and live a normal life even though

so much has changed.

•This cancer has given me a new perspective on life.

Now, pre-cancer and post-cancer are two different phases. And to know that this is a life-changing event in the life of any patient. And how do people really cope? “I will do what it takes to get well, but I will also plan for the worst.” Some patients will say that. Whereas some will say, “I am going to try and live a normal life even though so much has changed.” And some others will say, “This cancer has given me a new perspective on life.” These are all ways people cope. Some cope by being angry, some cope by being depressed, and some cope by saying, “I am going to take the next step and move forward.” And so, we have got to be able to gauge, where is this patient in that journey of coping and hoping?

Bem, o pré-câncer e o pós-câncer são duas fases diferentes. E reconhecer que este é um evento que muda a vida de qualquer paciente. E como as pessoas podem realmente enfrentar a [realidade]? “Eu faço o que der para melhorar, mas também sempre planejo para o pior”. Alguns pacientes dirão isso. Enquanto que alguns dirão: “Vou tentar e viver uma vida normal, embora muito tenha mudado”. E outros dirão: “Este câncer me fez ver a vida sob outra perspectiva”. Essas são as formas que as pessoas utilizam para enfrentar [a realidade]. Alguns enfrentam [a realidade] com raiva, alguns ficam deprimidos e outros dizem: “Eu vou dar o passo seguinte e seguir em frente”. E então, temos que poder medir, onde se encontra o paciente nessa travessia de manter a esperança e enfrentar a realidade?

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Impact on Family and Caregivers Impact on Family and Caregivers Impact on Family and Caregivers Impact on Family and Caregivers

• Shock of diagnosis

• Increased caregiving demands

• Relationships

• Role strain

• Internalized feelings

• Reluctance to discuss physical change

• Fear of losing partner

• Resources

• Coping

Says a survivor: “The support of my family has truly helped me to better cope with the challenges I’ve faced after my cancer diagnosis.”

Another very, very important aspect, which we sometimes tend to forget, because we are more focused on the disease itself and curing that disease, but the patient’s family and caregivers are an extremely important part of this person. The shock of the diagnosis that the patient feels is felt equally or sometimes even more by the family and caregivers. These increasing caregiving demands on a wife who never used to work, was at home taking care of her children and bringing children back from school, and making good hot meals for the family now goes to work. Now has to start a whole different lifestyle of working and coping with the disease of her spouse. Relationships change. The roles have changed and so relationships change. There are internalized feelings, “I am angry, but I do not want to tell my sister or my brother about what I am feeling because that will further stress them out.” Reluctance to discuss physical change and often spouses of cancer patients have gone undiagnosed, with cancer or some other serious illnesses, because they did not want to impose further stress on the spouse. The fear of losing a partner and, “What am I going to do next. I cannot live without my spouse or without my partner.” “What kind of resources are there and how will I cope with this whole thing.” Says a survivor, “The support of my family has truly helped me to better cope with the challenges I have faced after my cancer diagnosis.”

Outro aspecto muito, muito importante, que, às vezes, tendemos a esquecer, porque nos concentramos mais na doença propriamente dita e na cura da doença, mas a família e os cuidadores do paciente são uma parte extremamente importante desta pessoa. O choque que o paciente sente por causa do diagnóstico é sentido igualmente ou, às vezes, mais ainda pelos familiares e cuidadores. As crescentes exigências na prestação de cuidados recaem numa esposa que nunca trabalhou, ficava em casa cuidando das crianças e buscando-as na escola e cozinhando refeições quentinhas e gostosas para a família, agora vai ter de trabalhar. Agora, tem de começar um trabalho completamente diferente e enfrentar a doença do seu cônjuge. Os relacionamentos mudam. Os papéis mudaram e, por conseguinte, os relacionamentos mudam. Há sentimentos internalizados: “Tenho raiva, mas não quero dizer o que estou sentindo à minha irmã nem ao meu irmão porque isso os estressaria ainda mais”. A relutância de falar sobre mudanças físicas, e frequentemente, os cônjuges de pacientes cancerosos não são diagnosticados, com câncer ou outras doenças graves, porque não quiseram impor mais aflição ao cônjuge. O medo de perder o companheiro e: “O que vou fazer agora? Não posso viver sem meu marido ou sem meu companheiro". “Que tipo de recursos existem e como posso enfrentar tudo isto?” Conta um sobrevivente: “O apoio da minha família tem me ajudado muito a lidar melhor com os desafios que tenho que enfrentar depois de ter sido diagnosticado com câncer”.

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It’s unpredictable

It’s a roller coaster

It is unpredictable. It is a roller coaster. There is no point in time where a physician can truly say, “Hey, you are going to live forever,” or, “You are going to live for 20 years,” because none of us is a God. However, we all do know that there are ups and downs in every phase of life, and with cancer, it is even more unpredictable. And all we can do is strengthen these patients along their roller coaster journey and make sure we are able to pick them up when they fall off the coaster.

É imprevisível. É uma montanha-russa. Não existe um momento em que o médico possa verdadeiramente dizer: “Ei, você vai viver para sempre” ou “Você vai viver por 20 anos” porque ninguém é Deus. No entanto, todos nós sabemos que há altos e baixos em cada fase da vida e, com câncer, é mais imprevisível ainda. E tudo o que podemos fazer é fortalecer estes pacientes ao longo dessa travessia de altos e baixos e cuidar para levantá-los quando eles caírem.



“I’ve been touched by the smallest gestures - a

squeeze of the hand, a gentle touch, a reassuring

word. In some ways these quiet acts of humanity

have felt more healing than the high-dose radiation

and chemotherapy that hold the hope of a cure.”

Kenneth B. Schwartz

“I’ve been touched by the smallest gestures, a squeeze of the hand, a gentle touch, or a reassuring word. In some ways, these quiet acts of humanity have felt more healing than the high-dose radiation and chemotherapy that hold the hope of a cure.” Kenneth Schwartz said this.

“Os menores gestos me comoveram, uma mão amiga, uma carícia cheia de ternura ou uma palavra reconfortante. De alguma forma, esses gestos silenciosos de humanidade foram de mais ajuda do que as altas doses de radiação e quimioterapia que detêm a esperança de uma cura”. Kenneth Schwartz disse isso.

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A Comprehensive ApproachA Comprehensive ApproachA Comprehensive ApproachA Comprehensive Approach

• Psychosocial assessments

• Psychosocial counseling and cognitive behavioral interventions

• Transition planning

• Education and referral

• Advocacy

• Program development, monitoring and follow-up

So, at the end of the day, what we want to look at, is a comprehensive approach institution-wide, wherever this institution may be, wherever this cancer care is being provided, to make sure that we have a comprehensive approach towards cancer care, in that, other than the medical assessments and the treatments, that we are on a parallel front, dealing with the psychosocial aspect of a patient’s care. Which means psychosocial assessments, counseling and cognitive behavioral interventions, transition planning, education and referral, advocacy, program development, monitoring and follow-up.

Então, afinal, o que queremos é ver uma abordagem integral que abranja toda a instituição, onde quer que ela esteja, onde quer que essa atenção oncológica seja oferecida, para garantir que temos uma abordagem integral na atenção oncológica, em que, além das avaliações clínicas e dos tratamentos, que estamos numa frente paralela, lidando com o aspecto psicossocial do cuidado do paciente. O que significa ter avaliações psicossociais, aconselhamento e intervenções cognitivo-comportamentais, planejamento de transições, educação e encaminhamento, defesa, desenvolvimento de programas, monitoramento e acompanhamento.



Tools for Psychosocial AssessmentTools for Psychosocial AssessmentTools for Psychosocial AssessmentTools for Psychosocial Assessment

• Screening should be routinely established

• Depression in the terminally ill should be

treated as vigorously as for those patients with

a better prognosis

• All staff should have basic skills to determine if there

is any suicidal risk so patients may be managed

Identification of barriers and stressors, which impact

patient and family coping and/or compliance with

treatment must be done in a systematic manner.

So what are some of the tools for psychosocial assessment? At MD Anderson, we have several ways to identify barriers and stressors that impact a patient at family coping or compliance. We may have a patient who is highly compliant, but there may be a family member who has a mood disorder or a family member who is completely stressed out, burnt out and fatigued, and may not be willing to comply with the treatment plan or even be supportive of the patient or the medical team. A lot of our discharges get held up because patient’s family members do not think that it is the right time for discharge or are not ready for the patient to be taken home, because they are afraid of how to care for the patient. Screening should be routinely established. Depression in the terminally ill should be treated as vigorously as for those patients with a better prognosis. So we are looking at screening at all levels, from the point of diagnosis to the end of treatment, at the point of progressive disease and advanced disease. And all staff must have the basic skills to determine if there is any

Então, quais são alguns dos instrumentos para a avaliação psicossocial? No MD Anderson, dispomos de várias maneiras para identificar barreiras e fatores de estresse que impactam a paciente quanto a enfrentar a família ou aderir ao tratamento. Talvez tenhamos uma paciente que adere muito bem ao tratamento, mas talvez haja um parente que tem um transtorno de humor ou um parente que está completamente estressado, mentalmente esgotado e exausto e talvez não esteja disposto a aderir ao plano terapêutico e nem apoiar a paciente ou a equipe médica. Muitas das nossas altas hospitalares não são efetivadas porque os familiares da paciente não acham que seja a hora certa para receber a alta ou não estão preparados para levar a paciente para casa, porque têm medo de como cuidar dela. O rastreamento deve ser rotineiramente estabelecido. A depressão no doente terminal deve ser tratada com o mesmo rigor utilizado para aqueles pacientes que têm um melhor prognóstico. Falamos de rastreamentos em

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suicidal risk so patients may be managed and be able to refer these patients very quickly to the department of professionals within the institutions that handle these issues.

todos os níveis, do ponto de vista do diagnóstico no final do tratamento ao ponto da doença progressiva, da doença avançada. E toda a equipe deve ter as habilidades básicas para determinar se existe algum risco de suicídio para poder controlar as pacientes e encaminhá-las bem rapidamente ao departamento dos profissionais nas instituições que lidam com esses problemas.



Psychosocial assessment varies by :

• Provider

• Screening tools

• Emotional state of patient at different

point of assessment

• Reporting

Depression ratings were influenced by crying,

depressed mood and medical factors rather than

more reliable indicators such as anhedonia, suicidal

thinking and hopelessness.

So again, psychosocial assessment varies by provider, the type of screening tools they use, emotional states of patients at different points of assessment, and the reporting structure.

Além do mais, a avaliação psicossocial varia com o provedor, o tipo de instrumentos de rastreamento que eles usam, o estado emocional das pacientes nas diferentes etapas da avaliação e da estrutura de apresentação de relatórios.

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Practical Concerns

• Housing

• Insurance

• Work/school

• Transportation

• Child care

• Caregiver

• Home care

• Prescription coverage

Family Concerns

• Dealing with partner

• Dealing with children

• Spiritual/religious concerns

Emotional Concerns

• Worry

• Fears

• Depression

• Nervousness

• Loss of interest

Physical Concerns

• Pain

• Fatigue

• Sleep

• Getting around

• Bathing/dressing

• Sexual

• Other _____________

NCCN Distress Thermometer NCCN Distress Thermometer NCCN Distress Thermometer NCCN Distress Thermometer

The National Cancer Comprehensive Network of the United States came up with a very, very valuable assessment tool for patient distress. This simple tool looks at four dimensions of patient care. Those dimensions are the practical concerns, the family concerns, emotional concerns, and the physical concerns encompassing the entire patient, which then gives us an idea for the patient’s distress level on a scale of 1-10. And, if the patient tells me that he is feeling suicidal, or he is feeling sad, or he is concerned about his sexual functioning on a scale of 1-10, his distress level is 6. Then that tells me something about where I need to start with this patient and where I need to go with this patient.

O National Cancer Comprehensive Network dos Estados Unidos propôs um instrumento muito, muito válido para avaliar a angústia e o sofrimento dos pacientes. Este simples instrumento considera quatro aspectos do cuidado do paciente. Estes aspectos são os problemas práticos, os problemas familiares, os problemas emocionais e os problemas físicos que englobam todo o paciente, o que nos dá uma ideia do nível de angústia do paciente em uma escala de 1 a 10. E, se o paciente me disser que está se sentindo suicida ou está se sentindo triste ou que está preocupado com a sua atividade sexual em uma escala de 1 a 10, o nível de angústia dele é 6. Isso me indica de alguma forma por onde preciso começar com este paciente e para onde preciso ir com ele.



Patients at Increased Risk for Distress Patients at Increased Risk for Distress Patients at Increased Risk for Distress Patients at Increased Risk for Distress

• History of psychiatric disorder/substance abuse

• History of depression/suicide

• Cognitive impairment

• Communication barriers

• Severe comorbid illnesses

• Family/caregiver conflicts

• Inadequate social support

History of psychiatric illness, history of depression, suicide, cognitive impairment, communication barriers, severe comorbid illnesses, like diabetes or hypertension or bipolar disorder or AIDS, all of these will put the patient at increased risk for distress and more so the inadequate social support of a patient’s circumstances can impact the patient’s distress level very highly.

Histórico de doença psiquiátrica, de depressão, suicídio, deficiência cognitiva, barreiras de comunicação, doenças comórbidas graves, como diabetes, hipertensão, transtorno bipolar ou Aids, todas elas colocarão o paciente num maior risco para angústia e sofrimento e mais ainda o apoio social insuficiente [impostos pelas] circunstâncias do paciente pode impactar muito o nível de angústia e sofrimento.

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Patients at Increased Risk for Distress (continued) Patients at Increased Risk for Distress (continued) Patients at Increased Risk for Distress (continued) Patients at Increased Risk for Distress (continued)

• Living alone

• Financial problems

• Limited access to medical care

• Young or dependent children

• Spiritual/religious concerns

• Social problems

Again, patients living alone, how many times and how often have we had patients being dropped at our doorstep who have no family, no friends, nobody wants them back home, or they are so tired taking care of the patient that they think it is the hospital’s duty to take care of this patient. Patients with financial problems, limited access to medical care, they are living in remote locations and areas and want to be closer to the hospital, they have young and dependent children, spiritual religious concerns as well as social problems. And how do we help these patients? These are the patients at increased risk for distress, but which are these patients? Who are these patients and how can you tell?

Também [temos] os pacientes que vivem sozinhos, quantas vezes e com que frequência largam à nossa porta pacientes sem família, sem amigos, ninguém os quer de volta em casa ou, então, estão tão cansados de cuidar do paciente que acreditam que o hospital tem a obrigação de cuidar dele. Pacientes com problemas financeiros, acesso limitado à atenção médica, morando em locais e regiões distantes e que querem ficar próximos ao hospital, têm filhos pequenos e dependentes, problemas espirituais e religiosos, bem como problemas sociais. E como os ajudamos? Estes são os pacientes com maior risco para angústia e sofrimento, mas quem são eles? Quem são estes pacientes e como podemos reconhecê-los?



Periods of Increased VulnerabilityPeriods of Increased VulnerabilityPeriods of Increased VulnerabilityPeriods of Increased Vulnerability

• Finding a suspicious symptom• During workup• Finding out the diagnosis• Awaiting treatment• Change in treatment modality• End of treatment• Discharge from hospital following treatment

Again, when a patient finds a suspicious symptom after treatment and feels that, “Oh, gosh, my disease is coming back, I am not going to through this again and I am not going back.” Or patients during work-up get into panic bouts where they feel, “Well you know I am feeling really sick, my hair is falling off and I think probably this is not a good sign. I might as well go home instead of spending so much money on this treatment and save up all my bucks for my family.” Finding out about the diagnosis: this is a pivotal moment in the life of any cancer patient is finding out about the diagnosis. Almost feels like a death warrant to many. Then awaiting treatment, anxiety of awaiting treatment, [you know] “What kind of treatment? How long will this treatment go on?” “What kind of side effects are going to happen?” “How can I cope with this?” Change in treatment modalities, okay, so we finished Herceptin, now we are going to do Taxol and then we are going to go and do radiation, or we are going to do surgery. “When is this treatment ever going to end and what does the end of treatment

Também quando um paciente descobre um sintoma suspeito depois do tratamento e sente que: “Oh, por Deus, a doença está voltando, eu não vou passar por isto de novo e não vou voltar”. Ou pacientes que quando ficam nervosos têm acessos de pânico em que se sentem [assim] “Bem, você sabe, me sinto muito doente, meu cabelo está caindo e talvez este não seja um bom sinal. Melhor mesmo ir para casa, em vez de gastar tanto dinheiro neste tratamento, e economizar todo o meu dinheiro para a minha família. Ficar sabendo do diagnóstico: este é o momento crucial na vida de todo paciente com câncer, é tomar conhecimento do diagnóstico. Para muitos é quase como se fosse uma garantia de morte. Depois, esperar o tratamento, a ansiedade de esperar pelo tratamento, [você sabe] “Que tipo de tratamento? Por quanto tempo mais vai continuar este tratamento?” “Que tipo de efeitos colaterais irão acontecer?” “Como posso enfrentar isto?” Mudança nas modalidades de tratamento, muito bem, então terminamos o Herceptin, agora

23

mean? “Is that the end of chemotherapy and the start of radiation or the beginning of immunotherapy?” “What does treatment itself mean?” “What is the difference between acute treatment and palliative treatment?” Discharge from hospital following treatment? Patients do not understand the differences between transition -- between transition points, being in the hospital, being discharged from the hospital, going to a nursing home or to a hospice.

vamos administrar taxol e, depois, vamos prosseguir com radiação ou vamos fazer cirurgia. “Quando vai terminar este tratamento e o que significa o fim do tratamento? “Isso é o fim da quimioterapia e o início da radiação ou o começo da imunoterapia?” “O que significa o tratamento por si mesmo?” “Qual a diferença entre tratamento agudo e tratamento paliativo?” Alta do hospital depois do tratamento? Os pacientes não entendem as diferenças entre transições – entre pontos de transição, estar no hospital, receber alta do hospital, ir para uma clínica de repouso ou um centro para atendimento de doentes terminais.



Periods of Increased Vulnerability Periods of Increased Vulnerability Periods of Increased Vulnerability Periods of Increased Vulnerability (continued)(continued)(continued)(continued)

• Stresses of survivorship• Medical follow-up and surveillance• Treatment failure• Recurrence/progression• Advanced cancer• End of life

Periods of increased vulnerability, again, could include stressors of survivorship for patients who survived their cancer, who have now been treated, their disease is in remission, but they still need to go back to a normal life. They still need to pick up the pieces where they left off. They need to have medical follow-up and surveillance. They need to understand that, if there is recurrence or progression, they need to come back, and who do they need to come back to? Again, how are they going to deal with advanced cancer issues, end of life issues?

Períodos de maior vulnerabilidade também poderiam incluir fatores estressantes de sobrevivência para pacientes que sobreviveram o câncer, que já foram tratados e cuja doença está em remissão, mas ainda precisam voltar a viver uma vida normal. Eles ainda precisam restabelecer a sua vida. Precisam receber acompanhamento e vigilância médicas. Precisam entender que, se há recidiva ou progressão, precisam voltar e para quem eles devem voltar? Além do mais, como vão lidar com os problemas do câncer avançado, com questões relacionadas ao final da vida?

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Patient Needs Assessment or Patient Needs Assessment or Patient Needs Assessment or Patient Needs Assessment or ePNAePNAePNAePNA

A patient needs assessment screen

to review the various dimensions of

a patient’s care i.e. psychosocial,

nutrition, spirituality, etc.

At MD Anderson, we have what is called a Patient Needs Assessment, which, a patient-- when the patient comes into the hospital or as an outpatient, the patient fills out a self-assessment about their own needs that are on a form, which are sectioned, or categorized into different sections. And so, when a patient decides that he is feeling a stress level from 1 to 10, of 6 or 5 or 4, he will indicate that on this form. When he does that, that referral is kicked out to social work to assess for psychosocial distress. If a patient says that they are not eating well, they need some nutrition consult, then the section on nutrition is checked off and the referral is kicked off to nutrition. If the patient has problems with mobility and needs physical therapy, or the patient has problems with bowel management, all of these sections deal with these problems separately and referrals are kicked out to the different disciplines to assess the patients further and meet their needs quickly.

No MD Anderson, temos o que se chama “Avaliação das necessidades do paciente”, na qual, um paciente – quando o paciente vem ao hospital ou como um paciente ambulatorial, o paciente preenche uma autoavaliação das suas próprias necessidades que estão num formulário, as quais estão separadas por seções ou categorizadas em diferentes seções. Então, quando um paciente decide que sente um nível de estresse de 6 ou 5 ou 4, numa escala de 1 a 10, ele indicará isso nesse formulário. Quando ele faz isso, o encaminhamento é repassado ao assistente social para avaliar o sofrimento psicossocial. Se um paciente diz que não está comendo bem, que precisa consultar sobre nutrição, então a seção de nutrição recebe uma marca e o encaminhamento passa para esse setor. Se o paciente tem problemas de mobilidade e precisa fisioterapia ou se o paciente tem problemas intestinais, todas estas seções lidam com tais problemas independentemente e os encaminhamentos são repassados às diferentes disciplinas para realizarem mais avaliações no paciente e atenderem rapidamente às necessidades.

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Strategic Intervention Strategic Intervention Strategic Intervention Strategic Intervention

Psychosocial Need Service

Understanding of illness, treatments,

and services

Strategies to improve patient-provider

communication

Coping with emotions surrounding illness

and treatment

Peer support groups,

counseling/psychotherapy, pharmacological

management of symptoms

Managing illness and health Comprehensive self-management/

self-care programs

Behavioral change to minimize

disease impact

Behavioral/health promotion interventions

such as smoking cessation help, patient

education

Managing disruptions in work, school

and family life

Family and caregiver education, assistance

with activities of daily living (ADLs)

Financial assistance Financial planning, insurance counseling,

eligibility assessment for social security

disability income

So there are different psychosocial needs and different strategies for each psychosocial need. Whether it is the understanding of the illness, treatments and services. And this is not just for patients, but also for the patients and their families. Coping with emotions, managing illness, how to manage this illness both at the hospital and at home. There are a lot of behavioral changes in patients. Some of them become quite obsessive sometimes. The families become overanxious sometimes. And that can have a very dynamic effect on both sides, including the providers. We do have patients sometimes who will not listen to any advice or instruction because they are not emotionally comfortable. And how do I get this patient there?

Então, existem diferentes necessidades psicossociais e diferentes estratégias para cada necessidade psicossocial. Quer seja o entendimento da doença, dos tratamentos ou dos serviços. E não é somente para os pacientes, mas também para os pacientes e seus familiares. Enfrentar as emoções, tratar a doença, como tratar esta doença no hospital e em casa. Os pacientes passam por muitas mudanças de comportamento. Às vezes, alguns deles se tornam bastante obsessivos. Às vezes, os familiares se tornam superansiosos. E isso pode criar um efeito muito dinâmico de ambos os lados, incluindo os profissionais de saúde. Às vezes, temos pacientes que não obedecem a nenhum conselho ou instrução porque não se sentem emocionalmente à vontade. E como faço para que obedeça?



Patients with Breast Cancer Patients with Breast Cancer Patients with Breast Cancer Patients with Breast Cancer

• Crisis intervention

• Adjustment to diagnosis and treatment

• Coping with life changes

• Stress/anxiety

• Fear, panic, anger, guilt, denial

• Issues related to:– Body image

– Sense of identity

– Sexuality

– Disability

– Grief and loss

– Advance care planning

– Death and dying

So, patients with breast cancer again have the same problems. We are constantly dealing with crisis intervention: a patient who is in a panic bout, has major issues adjusting to the diagnosis, cannot cope with the idea of maybe a surgery, radiation treatment, the side effects of fatigue, body image, grief and loss, the fear of death and dying. And so we try to provide services with counseling, the transitions of care, and patient protection or patient safety.

As pacientes com câncer de mama também têm os mesmos problemas. Lidamos constantemente com intervenções em situações de crise: uma paciente que está num acesso de pânico, tem muitos problemas para se ajustar ao diagnóstico, não pode tolerar a ideia de, talvez, uma cirurgia, radioterapia, os efeitos colaterais de fadiga, o aspecto físico, aflição e perda, o medo da morte e de morrer. Nesse sentido, procuramos oferecer serviços com aconselhamento, as transições da atenção e a proteção e a segurança da paciente.

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TRANSITIONS OF CARE

- Assisted living

- Nursing home

- Hospice

- Custodial/provider care

- Home provider

- Extended care facility

- Nursing home

- Assisted living

- Hospice

- Aged and disabled

services

Psychosocial Support Resources Psychosocial Support Resources Psychosocial Support Resources Psychosocial Support Resources

PATIENT PROTECTION

- Guardianship

- Abuse - children and

adults

- Domestic abuse

- Exploitation/neglect

- Clinical ethics

There are different types of counseling and there are different specialists for the different types of counseling. And so we must be very aware of who is the right professional or staff that can do the most effective piece of counseling for the different issues: adjustment to diagnosis, crisis intervention, communicating with the team, making treatment decisions, helping the family and caregiver to be more supportive, empowering them, discussing end of life issues. And discussing end of life issues, there is the point where the physician says, “Okay, we are at the point where the disease is so advanced, terminal nature of disease, the prognosis is less than a few months,” that is discussing end of life in terms of providing the prognosis. However, there is much more to that. There is more to discussing the end of life in terms of, “Okay, so we are at a point here and let us look at what our goals are from this point onwards. Is this quality of life? Do we want more treatment? What would be the impact of that? Where would you like to be at this point? How would like this to be planned?” The different mental health resources within the institution and outside.

Existem diferentes tipos de aconselhamento e existem especialistas diferentes para diferentes tipos de aconselhamento. Por isso, devemos estar muito alertas sobre quem é o profissional certo ou a equipe certa que pode realizar o trabalho mais eficaz de aconselhamento nos diferentes problemas: adaptações ao diagnóstico, intervenções em situações de crise, comunicação com a equipe, tomar decisões sobre tratamentos, ajudar a família e o cuidador a darem mais apoio, delegar-lhes autoridade, discutir assuntos sobre o fim da vida. Ao discutir assuntos do fim da vida, há o momento em que o médico diz: “Muito bem, estamos num ponto em que a doença está tão avançada, a natureza terminal da doença, que o prognóstico [de vida] é de alguns meses", em que discute o fim da vida no contexto de oferecer o prognóstico. Contudo, há muito mais por trás disso. Há muito mais do que discutir sobre o fim da vida em termos de, [por exemplo:] “Muito bem, chegamos a ponto aqui e vamos ver quais são as nossas metas a partir desse ponto. É isto qualidade de vida? Queremos mais tratamentos? Qual seria o impacto disso? Onde você gostaria de estar neste momento? Como você gostaria que isto fosse planejado? Os diferentes recursos de saúde mental dentro e fora da instituição.

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Psychosocial Support Resources Psychosocial Support Resources Psychosocial Support Resources Psychosocial Support Resources

FINANCIAL ASSISTANCE

-Insurance-Employment issues-Health insurance-Governmental/state assistance

-Short/long term disability-Cancer help organizations

DOCUMENTS

-Visa letters-Letters to attorneys, criminal justice system, patients and

family members to employers

or schools, FMLA, military

leave, jury duty excuse

TRANSPORTATION

-Volunteer airlines: Angel Flight Corporate Air Angel,

Air Lifeline Mercy Flight,

Freedom Flight

-Air Ambulance-Gas, bus, cab vouchers-Parking-American Red Cross -American Cancer Society

HOUSING

-Contracted programs-Hotels, motels-Guest programs-Charity organizations

PHARMACY/SUPPLIES

-Explore resources/indigent drug reimbursement

-Provide information

EDUCATION/INFORMATIO

N/REFERRAL

Now, there are also other concrete resources, which are equally important and that address the practical concerns of a patient’s day-to-day treatment journey, and that is: housing, transportation, financial assistance, pharmacy, education, documents. These are not small issues.

Além disso, existem outros recursos concretos, que têm a mesma importância e que tentam resolver os problemas práticos que a paciente enfrenta no dia a dia na sua travessia de tratamentos, e que são: habitação, transporte, auxílio financeiro, farmácia, educação, documentos. Esses não são problemas menores.



• Social Work

• Place…of Wellness

• Psychiatry

• Chaplaincy

• Anderson Network

• Fatigue Clinic

• Neuropsychology

• Cancer Prevention

• Patient Advocacy

• The Learning Center

• Supportive Care

• Palliative Care &

Rehabilitation Services

• Pain Management

• Ethics Services

• Tobacco Treatment

• Sleep Clinic

Psychosocial Support Services at MD AndersonPsychosocial Support Services at MD AndersonPsychosocial Support Services at MD AndersonPsychosocial Support Services at MD Anderson

A patient came in for cancer treatment, was told what the estimated bill would be, this patient was self-pay. Patient paid up a certain amount as a deposit and then was told that he can go in for a couple of consults. The patient went for consults, went and checked on his bill. The amount that he had deposited was almost now down to half. The patient was shocked and the reason being that the patient had not been adequately informed or provided the information about what happens at each stage. The patient said, “Hey, I have been here only for two consults and one test or two tests and the bill is so much.” Well, all the rates were then provided to the patient and he finally understood where his money had gone, and how quickly the money can go, and what we need to do to make sure that he is still able to continue his treatment. So, now at MD Anderson Cancer Center we have several departments that help with psychosocial support services and each area has its area of expert professionals who work with patients to resolve psychosocial concerns and issues.

Um paciente veio para receber tratamento contra câncer, lhe disseram o valor estimado da conta, este paciente era particular. O paciente pagou uma parte de entrada e, depois, lhe disseram que podia entrar para algumas consultas. O paciente foi às consultas, foi e olhou a conta. A quantia que havia depositado estava quase na metade. O paciente ficou chocado e a razão foi que ele não havia sido suficientemente informado ou não havia sido informado sobre o que aconteceria em cada etapa. O paciente disse: “Olha aqui, estive aqui somente por duas consultas e um ou dois testes e a conta é tão alta”. Bem, entregaram todas as taxas ao paciente e ele finalmente entendeu para onde tinha ido seu dinheiro e com que rapidez o dinheiro pode ir, e o que precisamos fazer para ter certeza de que ele ainda pode continuar o tratamento. Agora, no MD Anderson Cancer Center temos vários departamentos que prestam serviços psicossociais de apoio e cada área tem a sua área de profissionais especializados que atendem pacientes

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para resolver problemas e assuntos psicossociais.



• Individual and group counseling: Screen and identify high risk

patients and families, crisis intervention, adjustment to diagnosis

and treatment

• Transitions of care: Pre-hospice, nursing home, assisted living

assessment, education and counseling

• Protection issues: Guardianship, abuse (child and adult), domestic

violence, exploitation/neglect

• Resources for housing, transportation and practical quality

of life concerns

• Custodial/provider services information, mental health resources,

family service centers, etc.

• Advance care planning

Department of Social WorkDepartment of Social WorkDepartment of Social WorkDepartment of Social Work

Psychosocial Counseling Services

The Department of Social Work provides individual and group counseling that identify and counsel high-risk patients and families, provide crisis intervention, and help with adjustment to diagnosis and treatment. They help with transitions of care. So if a patient is going into hospice, just to tell the patient, “Oh you know I am going to get you connected to hospice,” means nothing. But to be able to explain to the patient what hospice can do, how will it help the patient in the long run, what does it actually mean, and making the patient feel completely comfortable about this new transition to care, because, if you do not do that, the patient is going to come right back through our emergency center and not have the quality of life that they could have got otherwise. Protection issues like guardianship, abuse, domestic violence, exploitation. A lot of cancer patients do have issues with being exploited or abused, not because there are actually abusers in the home, but because the caregivers are completely burdened and overwhelmed and are not able to cope with the situation themselves. Resources for housing, transportation and practical quality of life concerns, custodial and provider services information. This is very, very important because patients, -- this is the first time they have been hit with something like this. They have no idea of where to start, where to go and what to do. And advanced care planning in terms of, “Okay, so this might take another six months to a year, or two years or five years. Let’s look at what we want to do; what are the different things that could happen and how do we want to proceed in a planned manner?”

O Departamento de Assistência Social oferece aconselhamento individual e em grupo para identificar e aconselhar pacientes e familiares em alto risco, oferecer intervenção em situações de crise e ajudar com a adaptação ao diagnóstico e ao tratamento. Eles ajudam com as transições da atenção. Então, se um paciente vai a um centro para atendimento de pacientes terminais, dizer-lhe apenas: “Oh, você sabe, vou providenciar para que se comunique com o centro para atendimento de pacientes terminais”, não significa nada. Mas poder explicar ao paciente o que esse centro para pacientes terminais pode fazer, como ajudará o paciente a longo prazo, o que realmente significa e fazê-lo ficar bem à vontade no que concerne a esta nova transição para cuidados, porque se você não fizer isso, o paciente voltará direto pelo pronto-socorro e não terá a qualidade de vida que poderia ter. Assuntos de proteção, como curatela, maus-tratos, violência familiar, exploração. Muitos pacientes com câncer são explorados ou sofrem maus-tratos, não porque na casa haja pessoas que maltratam, mas porque os cuidadores estão completamente sobrecarregados e sufocados e não podem enfrentar a situação sozinhos. Recursos para habitação, transporte e problemas práticos de qualidade de vida, informações de serviços de custódia e provedores. Isto é muito, muito importante porque os pacientes – essa é a primeira vez que eles passam por algo semelhante. Eles não têm ideia por onde começar, para onde ir e o que fazer. E o planejamento de atenção avançada em termos de: “Muito bem, então isto talvez leve outros seis meses a um ano, ou dois anos ou cinco anos. Vejamos o que queremos fazer; quais são as coisas

29

que poderiam acontecer e como queremos proceder de maneira planejada?”



PlacePlacePlacePlace...of Wellness...of Wellness...of Wellness...of Wellness

• Integrative medicine consultation • Acupuncture• Massage• Individual and group counseling• Support groups• Expressive therapies (art, music)• Movement therapies (yoga, tai chi, pilates)• Nutrition groups and consultation• Relaxation techniques• Complementary

We have The Place of Wellness that helps patients with integrative medicine consultation. They have acupuncture. They have massage. They have individual and group counseling, support groups, expressive therapies like art and music. There is yoga, tai chi, nutrition groups, relaxation exercises and complementary medicine consults that give patients another alternative to the cancer treatments, or complements the cancer treatments that they are undergoing currently.

Temos o Place of Wellnes [Lugar de Bem-estar] que presta serviços de consultas ao paciente com medicina integrativa. Eles oferecem acupuntura. Eles oferecem massagem. Eles oferecem aconselhamento individual e em grupo, terapias de expressão, como arte e música. Oferecem ioga, tai chi, grupos de nutrição, exercícios de relaxamento e consultas de medicina complementar que proporcionam aos pacientes outras opções aos tratamentos contra o câncer a que eles se submetem no momento, ou que complementam esses tratamentos.



PsychiatryPsychiatryPsychiatryPsychiatry

• Counseling for individuals, caregivers, couples

and children

• Medication management for psychiatric disorders

• Treatment for sexual dysfunction and substance

dependence

• Physician referral required

Also Psychiatry helps with medication management for psychiatric disorders while providing counseling for individuals, caregivers, couples and children. They also help with the treatment of sexual dysfunction and substance dependence.

A psiquiatria também ajuda com tratamentos terapêuticos para transtornos psiquiátricos, além de oferecer aconselhamento para pessoas, cuidadores, casais e crianças. Também oferecem tratamentos para a disfunção sexual e dependência de substâncias químicas.

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• Spiritual support to all patients, family members and staff

• Spiritual support for all faith traditions

• Visits from a particular religion upon request

ChaplaincyChaplaincyChaplaincyChaplaincy

Chaplaincy is a wonderful department at MD Anderson that helps with spiritual support to all our patients and family members. And this support is provided for people from all faith traditions.

O serviço de capelães dispõe de um departamento excelente no MD Anderson que oferece apoio espiritual aos pacientes e familiares. E este apoio é oferecido para pessoas de todas as religiões.



Anderson NetworkAnderson NetworkAnderson NetworkAnderson Network

• Connects patients with patients

• Two hospitality centers

• Patient/caregiver telephone line

• Pediatric caregiver telephone support network

• Annual patient/caregiver conference

• Weekly educational presentations (PIKNIC)

• Adult patient camp and day trips (camp carefree and day away)

• Community outreach programs

• Online support: Cancer Survivor Message Board, WarmNet, Ask the Expert

We have what is called The Anderson Network that is a network of patients who have been diagnosed with cancer, treated with cancer, and are part of the MD Anderson family. So this Anderson Network connects one patient to the other. A patient with breast cancer with metastatic disease, Stage 1, might be connected to another patient who has a similar diagnosis, disease has been treated or undergoing treatment, and help the other patient to find some support with emotional, psychological, and cultural issues. There are hospitality centers all around the hospital. There are patient/caregiver telephone lines. They have adult patient camps, community outreach groups and online support groups through The Anderson Network.

Temos o que se chama The Anderson Network [A Rede Anderson] que é uma rede de pacientes que receberam o diagnóstico de câncer, foram tratados para câncer e fazem parte da família do MD Anderson. A Rede Anderson põe em contato os pacientes uns com os outros. Uma paciente com câncer de mama com doença metastática, Estágio 1, talvez possa se comunicar com outra paciente que recebeu um diagnóstico similar, já terminou o tratamento ou está sendo submetida a ele no momento e ajuda a outra paciente a encontrar algum apoio para problemas emocionais, psicológicos e culturais. Existem centros de hospitalidade ao redor de todo o hospital. Existem linhas de telefone para pacientes/cuidadores. Eles dispõem de acampamentos para pacientes adultos, grupos de ação social comunitária e grupos de apoio on-line por meio do Anderson Network.

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CancerCancerCancerCancer----related Fatigue Clinicrelated Fatigue Clinicrelated Fatigue Clinicrelated Fatigue Clinic

• Comprehensive evaluation of fatigue

• Patients with or without evidence of cancer


We also have a Cancer-related Fatigue Clinic. And we know, we all know that fatigue impacts the quality of life of a patient just like pain, and can, in fact, drive a patient into serious depression. Comprehensive evaluation of fatigue, and again, for patients with or without evidence of cancer, this can be done at our Fatigue Center.

Também temos uma Clínica de Fadiga relacionada ao câncer. E sabemos, todos nós sabemos que a fadiga impacta a qualidade de vida do paciente, assim como a dor e, de fato, pode levar o paciente a uma depressão grave. A avaliação integral da fadiga, para pacientes com ou sem evidência de câncer, pode ser feita no nosso Centro de Fadiga.


Cancer Cancer Cancer Cancer ---- Hoping and CopingHoping and CopingHoping and CopingHoping and CopingChild, Adolescent, and Young AdultChild, Adolescent, and Young AdultChild, Adolescent, and Young AdultChild, Adolescent, and Young AdultPsychosocial Outreach ProgramPsychosocial Outreach ProgramPsychosocial Outreach ProgramPsychosocial Outreach Program

• Child and adolescent life

• Pediatric psychology and neuropsychology

• Pediatric education

• Career and vocational counseling

• Kim’s Place

We also have a Child, Adolescent, and Young Adult Psychosocial Outreach Program for children, adolescents, siblings, parents of children. We have a wonderful place called Kim’s Place where children can go and play games and connect with each other.

Além disso, temos o Child, Adolescent, and Young Adult Psychosocial Outreach Program, um programa de atendimento psicossocial voltado para crianças, adolescentes e adultos jovens. Temos um ótimo lugar chamado Kim's Place, onde as crianças podem ir e jogar jogos e se interrelacionarem.

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Patient AdvocacyPatient AdvocacyPatient AdvocacyPatient Advocacy

• Complaints

• Unresolved issues

• Questions about MD Anderson

• Resources and services

Patient Advocacy helps with patient complaints regarding, maybe wait times. Maybe they do not like the way someone has spoken to them, or they are not happy with the billing concerns or issues. Patient advocacy will assist patients and navigate them through the right channels to address their questions and concerns.

A Defesa do Paciente presta auxílio ao paciente com queixas referentes a, talvez, tempos de espera. Talvez eles não tenham gostado da maneira como alguém falou com eles ou não estão satisfeitos com as preocupações ou problemas relativos à fatura. A defesa do paciente auxiliará os pacientes e lhes indicará o caminho certo para resolverem suas dúvidas e problemas.



Learning CenterLearning CenterLearning CenterLearning Center

Latest information on:

• Cancer care

• Support

• Prevention

• General health and wellness

We have a wonderful Learning Center that has immense information and updated information on cancer care with every type of cancer, the support, prevention programs, and general health and wellness information.

Contamos com um ótimo Centro de Aprendizagem que tem um volume imenso de informações e dados atualizados sobre atenção oncológica com todos os tipos de câncer, apoio, programas de prevenção e informações gerais de saúde e bem-estar.

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Supportive Care CenterSupportive Care CenterSupportive Care CenterSupportive Care Center

Assessing and managing cancer related:

• Physical and emotional symptoms

• Preventing or minimizing losses of

physical functioning

Our Supportive Care Center assesses and manages physical and emotional symptoms, preventing, minimizing losses of physical functioning, and this is very, very crucial to our patients who have mobility issues.

Nosso Centro de Cuidados de Apoio avalia e controla os sintomas físicos e emocionais, mediante prevenção, minimizando perdas das funções físicas, e isto é muito, muito importante para os nossos pacientes que têm problemas de mobilidade.



Pain ManagementPain ManagementPain ManagementPain Management

• Comprehensive pain assessment

• Multidisciplinary pain treatment for inpatients

and outpatients

• Treatment for acute and chronic pain related

to cancer

Pain Management, again, we have a superb Pain Management Service that does comprehensive pain assessment and treats acute and chronic pain related to cancer.

Tratamento da Dor, também temos um Serviço de Tratamento da Dor que realiza avaliações integrais da dor e trata dores agudas e crônicas relacionadas ao câncer.

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Ethics Consultation ServiceEthics Consultation ServiceEthics Consultation ServiceEthics Consultation Service

• Patients and caregivers who face difficult decisions

related to medical treatment or other aspects of care

• Ethics consultation advisory only

• Available 24 hours/7 days a week

• Strictly confidential

• Free of charge

Our Ethics Consult Service is available 24 hours, 7 days a week. This is strictly confidential. And patients and caregivers who face difficult decisions related to medical treatment have the privilege of asking for an ethics consult with their providers to be able to make a reasonable decision.

Nosso Serviço de Consulta Ética está disponível as 24 horas, os sete dias da semana. Esse serviço é estritamente confidencial. E os pacientes e cuidadores que enfrentam decisões difíceis relacionadas ao tratamento médico têm o privilégio de solicitar uma consulta sobre ética com os provedores para poderem tomar uma decisão razoável.



Neuropsychology and Chemo Brain Neuropsychology and Chemo Brain Neuropsychology and Chemo Brain Neuropsychology and Chemo Brain

Neuropsychologists provide:

• Assessment of cognitive and neurobehavioral

symptoms

• Intervention strategies for cognitive and

neurobehavioral changes due to cancer, cancer

therapy or co-existing problems (MIND Clinic)

We have Neuropsychology and ChemoBrain Clinics that help with assessment of cognitive and neurobehavioral symptoms, which come up with intervention strategies for these patients with chemobrain.

Temos a Clínicas de Neuropsicologia e de ChemoBrain que realizam avaliações dos sintomas cognitivos e neurocomportamentais, que propõem estratégias de intervenção para os pacientes com “chemobrain”.

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Cancer Prevention Cancer Prevention Cancer Prevention Cancer Prevention

• Comprehensive and site-specific cancer screening

• Risk assessment and risk reduction

• Smoking cessation and programs

• Genetic testing

Also our Cancer Prevention Center that does cancer screening, risk assessment, has smoking cessation programs and genetic testing.

Também nosso Centro de Prevenção de Câncer que realiza rastreamento de câncer, avaliação de riscos, oferece programas para deixar o hábito do fumo e teste genético.



Tobacco Treatment Tobacco Treatment Tobacco Treatment Tobacco Treatment

• Voluntary program

• Counseling and tobacco-treatment medication to

eligible MD Anderson patients

• In-person behavioral counseling

• Over-the-counter nicotine replacement

• Therapies

• Tobacco-treatment prescription medication

Our tobacco treatment is an extremely effective program that helps with patients who want to stop smoking. And this again, they provide behavioral counseling on an individual basis and also provide over-the-counter nicotine replacement therapy.

Nosso tratamento para o fumo é um programa extremamente eficaz que auxilia os pacientes que querem parar de fumar. Além disso, oferecem aconselhamento comportamental individual e terapia de reposição de nicotina sem receita médica.

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Sleep Clinic Sleep Clinic Sleep Clinic Sleep Clinic

For patients with the following symptoms:

• Sleep apnea and snoring

• Restless leg syndrome

• Insomnia or excessive daytime sleepiness

• Behavioral sleep disorder

We have a wonderful Sleep Clinic that helps with the sleep apnea, restless leg syndrome, insomnia and behavioral sleep disorders; a lot of counseling, and management of their sleep cycles.

Temos uma excelente Clínica do Sono que presta serviços para a apneia do sono, a síndrome das pernas inquietas, transtornos de insônia e comportamentais do sono; muito aconselhamento e tratamento dos ciclos do sono.



• Assess and manage chronic cancer-related symptoms

• Help patients attain the best possible quality of life


Palliative Palliative Palliative Palliative CareCareCareCare and Rehabilitation and Rehabilitation and Rehabilitation and Rehabilitation

Our Palliative Care and Rehabilitation Center assesses and manages chronic cancer-related symptoms. This could be while they are undergoing active cancer treatment, or when they come to the end of their treatment, when they are at the end stages of their treatment or in the advanced stages of their disease. This service helps patients obtain the best possible quality of life by coordinating their symptom management between pain and fatigue, emotional, psychological, physical and spiritual. Again, physician referral is required and this service also helps patients understand the difference between symptom management in acute care treatment, and symptom management at the end of treatment where it is mainly palliative and end of life therapy. So, we come to the end of this presentation with the psychosocial support for patients with breast cancer and I do hope that this presentation was useful to you. Thank you for your time and attention.

Nosso Centro de Cuidados Paliativos e Reabilitação avalia e trata os sintomas crônicos relacionados ao câncer. Isso pode ser realizado enquanto eles estão sendo submetidos ao tratamento para o câncer ou quando chegam ao fim do tratamento, quando estão nos estágios finais do tratamento ou nos estágios avançados da doença. Esse serviço permite que os pacientes obtenham a melhor qualidade de vida possível ao coordenar o manejo dos sintomas, entre dor e fadiga, emocionais, psicológicos, físicos e espirituais. Além do mais, o encaminhamento médico é obrigatório e esse serviço também ajuda os pacientes a entenderem a diferença entre o manejo dos sintomas num tratamento de cuidados intensivos e o manejo dos sintomas no fim do tratamento, que consiste basicamente de cuidados paliativos e terapia de final de vida. Chegamos ao fim desta apresentação com o apoio psicossocial das pacientes com câncer de mama e espero que estas informações tenham sido proveitosas para vocês. Muito obrigado pela

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atenção.

psychosocial impact of breast cancer -cancer ---hoping and ... · psychosocial impact of breast...

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