terça-feira, 25 de julho de 2017


My mother wanted a peaceful death at home. I nearly blew it for her.


At my mother’s memorial service, lots of people asked to speak. While the details varied, there were important consistencies across all of the wonderful memories that were shared: her great warmth, infinite curiosity, pioneering spirit and utter inability to tell a joke.

But most of all, everyone in the standing-room-only crowd recalled my mother’s fierce independence and drive to do things “her way.” And nowhere was this drive better demonstrated than in her determination to go out on her own terms.

For this, she had needed my help, and I very nearly blew it.

When — just a few days after her 89th birthday — my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I knew to be her fervent wish: NO treatment of any kind beyond symptom relief. NO invasive procedures, NO chemo or radiation, NO life-prolonging treatments. NONE! She wanted only one thing: to spend the rest of her days in her New York apartment in her lively and supportive community. My job was simply to help make sure her wishes were honored. As it turned out, this was not so simple. Just days after the initial diagnosis, despite my mother’s long-standing and just-repeated wish, I found myself reluctantly taking the first step toward a life-prolonging surgery.

How had we ever come to even consider this?
The ‘limited’ option

For as long as I could remember, my mother had made it clear that she did not value longevity for longevity’s sake. Her greatest fear had always been living past the point when she felt good about being alive. “Can you believe it?” a friend or relative would sometimes exclaim in delight about a markedly diminished elderly relation. “She just celebrated her 96th birthday!” In response, my mother would shudder and reply that she hoped that she would not face a similar fate.

From the instant she learned about the mass, my mother told all the doctors who paraded by that she was really okay with the situation, as long as she could opt to do nothing about it and have a peaceful end when the time came. Though increasingly weak as her hospitalization wore on, she remained clearheaded and determined.

Nonetheless, on the fourth day in the hospital, a surgeon arrived at my mother’s bedside to discuss the risks and benefits of two surgical options for addressing the threat posed by the mass. One option was to remove the mass, while a second involved rerouting the intestine around the mass. Because the mass was growing slowly, the surgeon explained, and because there was no sign of cancer anywhere else, the mass could be left intact. In fact, the surgeon confidently pronounced my very frail mother an “excellent” candidate for this “limited’ option and predicted a “relatively insignificant recovery time with minimal pain and discomfort.”

But — oh, yes — there was one more thing worth mentioning: The “limited” option involved a colostomy. A hole would be created surgically in my mother’s belly, out of which stool would exit into a pouch. The surgeon assured us that with the new technologies and products that were available, my mother would adjust in no time. While he himself avoided the specifics, we learned this would include her having to change the bag, adjust her diet, perform the necessary skin care and live with anxieties about whether the bag would begin to smell, bulge visibly or soil her clothing.

When I asked what would happen if my mother declined surgery altogether, the surgeon provided a chilling answer. Forgoing surgery would cause her colon to rupture, resulting in sepsis, acute and possibly prolonged abdominal discomfort and eventually excruciating pain. He described in gruesome detail what would happen inside her body to cause this pain. No way would he ever let his mother suffer through that, he pronounced, horrified at the mere thought.

In the face of the surgeon’s unambiguous advice and the certainty he projected, our own certainty wavered. When the surgeon left the room, my mother began to weep silently. Her hope of a dignified death had been dashed. She was facing the possibility of choosing between excruciating pain or being one of the “lucky ones” who “get to live”— in an increasingly physically and cognitively feeble state — to 96!

Correct predictions?

I reluctantly scheduled a pre-op appointment for later that month, but I also reached out to a friend who specializes in research on patient engagement. She suggested I further probe the surgeon’s predictions and assertions about the likely impacts of undergoing surgery as well as the consequences of declining it. What exactly did a “relatively easy” recovery mean for an 89-year-old woman who weighed only 118 pounds? How might a colostomy actually affect the quality of her life? Could the pain of a ruptured colon be effectively controlled by a clinician who specialized in palliative care?

I started by investigating the surgeon’s assurances regarding the simple-to-use and odor-free technologies that were available for colostomy patients because I knew that this would be of particular concern to my mother. We faced the added complication that she was reliant on a wheelchair and needed the services of a full-time home attendant who might be called upon to help with a new set of needs.

I called one of my mother’s former health aides, who knew her abilities, limitations and sensitivities at least as well as I did. I trusted her to give me straight answers. I asked whether she had had any experience with colostomy paraphernalia and how she thought my mother would adjust to using it.

While she assured me that Mom would most likely be able to change the bags herself, she immediately got to the more central issue: “You know your mother,” she told me. “You know how much she cares about personal hygiene. She will not like the smell. Even if it is not a strong smell, she will smell it. They will tell you there is no smell, but I will tell you your mother will smell it. It will bother her. A lot.”

She went on to describe having cared for an outgoing and sociable retired lawyer who became so self-conscious after his colostomy that he had become a recluse.

For my mother, this would be a truly catastrophic blow. Formerly very active and outgoing, she had already lost her mobility and much of her independence to parkinsonism. Nonetheless, she remained surrounded by many devoted and lively friends. When sitting on the bench in front the apartment building that had been her home for 50 years, a steady stream of neighbors, young and old, would stop to sit and chat. Her apartment door was never locked, so friends constantly popped in to play Scrabble, watch a film or talk politics.

Nonetheless, over the previous five years, my mother had already begun to see her life as irremediably diminished. Aside from the parkinsonism, she was growing extremely frustrated with the gradual cognitive decline associated with normal aging and its impact on her memory and her ability to use her computer, cellphone and other mainstays of modern life. The prospect of social isolation was more than she should have been expected to bear.

The magic words

This bleak outlook strengthened my resolve to learn more about whether palliative care could be effective against the consequences of rejecting further treatment. The following morning, we mentioned to the doctor who was preparing her for discharge that our next step would be to identify a palliative-care specialist who could tell us whether and to what degree the dire consequences of declining surgery could be mitigated.

As luck would have it, the doctor told us that he was trained in palliative care. He immediately validated my mother’s decision to forgo surgery and offered his unequivocal assurance that any future pain could be effectively managed. He explained that she was eligible for home-based hospice, which would include palliative care. This was the first that we had heard of this program.

I can’t say whether the surgeon who advised us was intentionally engaging in scare tactics. Clearly, his rosy picture of life after surgery and his assessment of the alternative were based on his own values, fears and preferences rather than those expressed by my mother, an elderly woman who above all else feared a longer and increasingly limited existence. Moreover, he was either ignoring or ignorant of the potential mitigation of pain and suffering available through effective palliative care.

Given my mother’s very clear wishes, particularly when coupled with New York’s Palliative Care Information Act — requiring that all patients facing terminal illness be counseled about palliative care and end-of-life options — it is astonishing that the option of hospice with palliative care was not presented to us early in my mother’s hospital stay. It was only when we finally said the seemingly magic words — “we would like to confer with a palliative-care doctor” — that we learned that her wishes could, in fact, be granted.

I shudder to think about what might happen to people who are less persistent or do not know what to ask, and I have since contemplated what might be done to better support them.

Ideally, all hospitals would have palliative-care teams routinely visit all seriously ill patients and present both palliative-care and hospice options. It would also be immensely helpful if all physicians who treat patients with potentially terminal or significantly life-limiting diagnoses understood palliative care well enough to be able to discuss it comfortably and meaningfully. A fundamental first step will be getting more physicians to accept that they alone may not always know what is best for a patient: A not-yet-published study at four hospitals showed that 45 percent of doctors believed that they are in a better position than patients to decide what their patients need.

My mother would have had some choice words for these doctors. She would have pointed to the last six months of her life as evidence of the soundness of her choice.

Spared the aftermath of a surgery she did not want, my mother ate, looked and felt better than she had in months. She took in several museums. We spent a glorious day at the New York Botanical Garden. Perhaps most fittingly, we held a show of her beautiful watercolors in the community room of her co-op, which was attended by more than 100 neighbors, friends and relatives. Aside from providing a wonderful occasion to bring us all together, the show provided an opportunity for my mother to give back, as she proudly donated the proceeds from the sale of some of her paintings to Morningside Retirement and Health Services, the nonprofit organization whose services had proved invaluable to her and other seniors in her community as they aged in place.

Throughout this period, my mother’s outstanding hospice team delivered on the promise of compassionate, effective palliative care. They were careful to include her, her aides and me in all discussions of her care. They told us what to expect and described developments that might signal the need for a change in regimens. Far from doing nothing, palliative care involved active monitoring and managing of her diet, digestion and medications to maximize her comfort and quality of life. My mother felt engaged, respected and supported — and she experienced virtually no physical pain.
Slipping away
About two weeks before her death, my mother began to feel very weak. She became increasingly frail. She lost interest in visitors and phone calls. At one point, she experienced an extremely sharp pain as her home attendant was transferring her from a chair to her bed. The hospice team provided medication that eliminated both her growing anxiety and the pain associated with such transfers.

One evening, I woke her from a nap to ask if she wanted dinner. She said she would, so I gave her a dose of morphine in anticipation of moving her to the dinner table. When I went to get her, she demurred: “Why would I want to move anywhere when I am so comfortable right here?” Those were her last words. She fell back asleep, and sometime that night she lost consciousness. Over the following 2½ days, in keeping with her wishes, she was heavily medicated as she slowly slipped away.

The evening before she drew her last breath, her nurse stopped in and gently stroked her brow. She assured us that my mother was in no pain and encouraged me to keep speaking to her — which, of course, I did. I told her how much I loved her and that I was truly grateful that she had been so clear about what she wanted. For it was because of the clarity of her wishes, and her steadfast and openly expressed desire to see them honored, that — together — we were ultimately able to get it right.

* Moss is a senior program analyst at the Agency for Healthcare Research and Quality in Rockville. This article was excerpted from the July issue of Health Affairs and can be read in its entirety at healthaffairs.org.


domingo, 23 de julho de 2017

Curso de Medicina

Tendência dos cursos de medicina é integrar disciplinas e oferecer visão global

Diretrizes curriculares de 2014 passaram a exigir pelo menos 760 horas de prática no SUS, e que cursos façam o estudante 'corresponsabilizar-se pela própria formação inicial, continuada e em serviço'.

Ana Carolina Moreno

Médicos formados com base na soma de habilidades profissionais e valores éticos: é com esse objetivo que os cursos de graduação em medicina têm caminhado para uma reforma no currículo, privilegiando o ensino de competências baseadas na prática e na "autonomia intelectual" dos futuros profissionais. De acordo com o nefrologista e clínico geral Henry Campos, que é reitor da Universidade Federal do Ceará (UFC), a maioria dos currículos mais modernos e contemporâneos, do Brasil e em outras partes do mundo, tem sido inspirada no conceito de integralidade.

"Antigamente, o que acontecia? A formação era muito fragmentada. Você estava fazendo às vezes a anatomia do pescoço e a fisiologia do pulmão", explicou ele, em entrevista ao G1. "Hoje isso tudo é feito de maneira integrada."

De acordo com o reitor da UFC, atualmente há várias formas de estruturar um curso de graduação em medicina no Brasil. "Os cursos podem ser organizados por sistemas: o sistema cardiovascular, sistema digestório, respiratório... Eles podem ser organizados por ciclos de vida: infância e adolescência, adulto, questões ligadas ao envelhecimento. E podem ter uma combinação de tudo isso", explica ele. 

"O que se busca hoje é facilitar a construção do conhecimento de uma maneira integrada e já aplicada à realidade que o aluno vai vivenciar." (Henry Campos, reitor da UFC)

O reitor da Universidade Federal do Ceará (UFC), Henry Campos, que é formado em nefrologia e clínica geral (Foto: Divulgação/UFC/Viktor Braga)

Ética, comunidade e autonomia intelectual

Em 2014, as Diretrizes Curriculares Nacionais do curso de medicina foram reformuladas pelo Ministério da Educação e pelo Conselho Nacional de Educação (CNE). Veja abaixo quais são as três principais competências esperadas atualmente dos estudantes formados na graduação: 

  • Atenção à saúde: "considerar sempre as dimensões da diversidade biológica, subjetiva, étnico-racial, de gênero, orientação sexual, socioeconômica, política, ambiental, cultural, ética e demais aspectos que compõem o espectro da diversidade humana que singularizam cada pessoa ou cada grupo social"
  • Gestão em saúde: "compreender os princípios, diretrizes e políticas do sistema de saúde, e participar de ações de gerenciamento e administração para promover o bem estar da comunidade"
  • Educação em saúde: "corresponsabilizar-se pela própria formação inicial, continuada e em serviço, autonomia intelectual, responsabilidade social, ao tempo em que se compromete com a formação das futuras gerações de profissionais de saúde, e o estímulo à mobilidade acadêmica e profissional"

Dentro da cada uma delas, há uma série de objetivos e habilidades previstas nas diretrizes, como "acesso universal e equidade como direito à cidadania, sem privilégios nem preconceitos de qualquer espécie".

Prática aliada à teoria: estudantes de graduação da Faculdade de Ciências Médicas da Santa Casa de São Paulo durante atendimento à comunidade do bairro em que estudam, em abril de 2017 (Foto: Divulgação/FCMSCSP/Daiane de Andrade Oliveira)

Seis anos de graduação

As diretrizes atuais mantiveram uma característica da carreira: ela exige muitos e muitos anos de dedicação. A carga horária mínima para a graduação em medicina é de 7.200 horas, que devem ser cumpridas em um prazo mínimo de seis anos. O conteúdo dos cursos precisa ser estruturado segundo "as necessidades de saúde dos indivíduos e das populações identificadas pelo setor saúde".

De acordo com Henry Campos, essa nove estrutura deve "facilitar a construção do conhecimento" por meio de metodologias como os laboratórios de habilidades. "Você trabalha com simulações, manequins, peças do corpo humano, para praticar exame ginecológico, exame de mama, procedimentos médicos. Hoje não é mais aceitável que, quando o estudante chegue para o encontro clínico, ele já não domine bem essas habilidades. Hoje se usa bastante o recurso tecnológico na formação para a aquisição dessas habilidades."

Na Faculdade de Medicina da USP, bonecos são usados em simulações pelos estudantes de graduação (Foto: Divulgação/FMUSP)

Outra opção de ensino é por meio da reprodução de situações clínicas, contando com a ajuda de pacientes padronizados, que são atores representando pacientes em determinada situação.

"Hoje o conceito de disciplina está cada vez mais abandonado. A tendência é não mais segmentar, separar. Quando você vai ver um doente, você não vê o doente por pedaço, você vê o doente como um todo, é a visão holística do paciente", afirmou o professor. 

Equipamentos dos cursos de medicina ajudam o estudante a aprender (Foto: Divulgação/Universidade Federal do Ceará)


Internato obrigatório

Essa nova tendência do ensino e formação de médicos no Brasil começou a ser debatida em 2013, com o anúncio da criação de um estágio obrigatório dos estudantes no Sistema Único de Saúde (SUS). A ideia original do governo federal era que o período de graduação fosse ampliado. Porém, quando as diretrizes saíram do papel, elas mantiveram a carga horária original da graduação, e remanejaram o número de horas que o estágio no SUS ocuparia dentro do período de internato que já existia.

Do total da carga horária, pelo menos 35% deve ser cumprida em no mínimo dois anos, com o período de estágio obrigatório, que é feito no regimo de internato. Isso quer dizer que todos os estudantes de medicina precisam obrigatoriamente passar pelo menos 2.520 horas da graduação em atividades práticas de internato supervisionado por professores.

 Fonte: CNE/Diretrizes curriculares dos cursos de medicina

As regras também definem a carga hora de cada área do estágio: pelo menos 30% do internato, ou cerca de 760 horas, são destinados à prática no SUS, nas áreas de atenção básica e de serviços de urgência e emergência. Antes de 2014, as diretrizes que estavam em vigor previam os mesmos 35% de carga horária da graduação dedicada ao internato, mas não exigiam que a passagem do estudante pelo SUS fosse obrigatória ou ocupasse uma parte tão grande do período de estágio.

Os demais 70% do internato, que somam aproximadamente 1.760 horas, são destinados ao estágio nas áreas de clínica médica, cirurgia, ginecologia-obstetrícia, pediatria, saúde coletiva e saúde mental. Não existe carga horária mínima para essas áreas, mas o estágio não pode passar de 20% da carga horária total do internato.

Fonte: CNE/Diretrizes curriculares dos cursos de medicina

Ligas médicas

É também durante a graduação que os futuros médicos começam a decidir que especialização vão seguir. Segundo Miller Barreto, que tem 29 anos, se formou na graduação pela UFC, em Fortaleza, e atualmente está no último semestre da residência em cirurgia do aparelho digestivo na USP, há estudantes que já entram na faculdade sabendo em que área vão se especializar, mas todos são obrigados a passar pelas matérias de todas as áreas clínicas.

“É uma coisa que parte muito do aluno. Tem gente que no primeiro dia de aula já dizia que iria ser oftalmologista, mas é uma cadeira que a gente via só no quarto ano", afirma ele. De acordo com o cirurgião, nesses casos, em geral, o que acontece é a influência dos pais ou parentes que já são especialistas na área.

Miller lembra que, no seu caso, sua primeira intuição foi seguir a área de cirurgia. Mas, depois da residência em clínica geral, que durou dois anos, ele disse que decidiu fazer uma segunda residência em cirurgia do aparelho digestivo depois de se interessar pelas aulas de anatomia do sistema digestivo. Em seguida, ele seguiu um caminho comum aos estudantes: entrou para a liga dessa área.

"Entrei na liga de cirurgia, convidavam a gente para visitar outros hospitais da cidade, acompanhar cirurgias. A área foi me envolvendo, fui criando gosto, acompanhando alguns cirurgiões de Fortaleza no horário livre, porque eles me chamavam. Automaticamente você vai criando gosto pela coisa", diz ele. As ligas médicas fazem parte de atividades extracurriculares do curso de graduação, e servem para que os estudantes entrem em contato mais próximo de cada especialidade, para descobrir se querem, depois, dedicar os anos de residência perseguindo uma especialização na área. 

Estudantes acompanham atividade da Liga de Neurologia da Universidade Federal do Ceará (Foto: Divulgação/UFC/Rafael Cavalcante)

Medical errors

Physicians need to openly discuss medical mistakes and near misses

Sara Scarlet

Like many surgical problems, compartment syndrome must be recognized rapidly. Failing to do so may lead to a patient’s losing function in a limb, losing the limb altogether, and, in extreme cases, dying. A physician-in-training I work with missed it. Her error made me realize that medicine is suffering from its own largely unrecognized compartment syndrome.

Late one night, an emergency physician at an outside hospital called the attending physician on my hospital’s burn surgery service about a patient whose arm had been badly burned. After a brief discussion, they agreed to transfer the patient to our hospital. The trainee admitted the patient to the hospital.

Somehow, the emergency medicine physician, the burn surgeon on call, the nurses, and the trainee all missed the harbingers of compartment syndrome — the tight burned skin, the fixed deformity of the hand, and the severe pain the patient was experiencing. This dangerous condition occurs when pressure inside a confined body space builds up as a result of internal bleeding or swelling. The increase in pressure prevents blood from flowing to the area. If compartment syndrome isn’t detected in time and treated, the limb can become permanently damaged, or may even need to be amputated.

Failing to recognize the urgency of the situation, the trainee didn’t wake me to discuss the case. Instead, she waited until the day team arrived to discuss the patient. That meant her condition went unrecognized for several hours and her care was significantly delayed.

I learned about the case that morning. Devastated by the number of clinicians who had missed the warning signs, I imagined the patient lying in her hospital bed with agonizing pain in her arm as it was starved of oxygen.

Fortunately, she escaped permanent damage and eventually left the hospital with normal function in her arm — what we in medicine call a “near miss.”

The next time the trainee was working in the hospital, I sent her a page to call me so we could debrief.

Her voice cracked nervously as she said hello. We exchanged the usual pleasantries. Her next words came as a shock. “Are you calling to yell at me?”

“No,” I said, “we need to talk about how we can all do better next time.”

We discussed the details of the case and reviewed compartment syndrome. I thought the conversation was going well. But then the intern surprised me by asking, “Am I going to get fired?”

That fearful question echoed the hidden curriculum of punitive responses to error that pervades the culture of medicine. It’s especially strong in surgery, where we tend to work apart from peers. With that isolation, it is easy to assume that others are somehow infallible, and that our personal errors are egregiously unique.

We must all recognize that putting an end to our silent solidarity about errors will empower us to provide better care.

What many trainees fail to recognize early in their careers is that errors usually aren’t the fault of a single clinician. Instead, they represent the failure of a much larger system of defenses, barriers, and safeguards. In the case of our patient with compartment syndrome, the error was on behalf of the entire medical team.

I shared with the trainee a story of a mistake of mine two years earlier but still vivid in my mind. A patient of mine developed critical limb ischemia — a rapid reduction in blood flow to one of her legs. In order to properly treat her, we planned to perform an angiogram, a procedure to look at the arteries in her leg. I gave her a dose of heparin to prevent her blood from clotting without taking the time to check the results of her previous blood tests. Had I looked, I would have seen that she had been given a dose of heparin the previous day. The extra dose I administered triggered a stroke. I felt extremely responsible for it, and did not leave her bedside for hours to make sure she received the appropriate care.

The next day, the patient thanked me for “my compassion,” her words hanging in the air in the busy intensive care unit. I had never felt so ashamed. Now I recognized the same painful feelings in my young colleague.

Most doctors vividly recall their “cases of regret.” These events undeniably shape our practice. As French surgeon René Leriche wrote in 1951, “Every surgeon carries about him a little cemetery, in which from time to time he goes to pray, a cemetery of bitterness and regret, of which he seeks the reason for certain of his failures.”

Most of these regrets are quite private. As Dr. Danielle Ofri reflected in her essay “My Near Miss” on her experiences with errors, “the instinct for most medical professionals is to keep these shameful mistakes to ourselves.” They do this in part to protect themselves. According to the 2013 National Healthcare Quality Report, most health care workers believe that mistakes will be held against them.

Like compartment syndrome, failing to openly discuss errors carries with it the deep, unrelenting pain of guilt, humiliation, and shame. Left unaddressed, these powerful emotions are damaging to our professional and personal lives. In addition, failure to openly acknowledge personal experiences with errors and near misses contributes to a culture of stigma. This kind of avoidance led my colleague to believe that she was the only trainee who had made a mistake, which instilled in her a deep sense of regret and shame.

Keeping medical mistakes in the shadows is bad for individual clinicians and for the medical system, since we can all learn from mistakes. So how do we discuss them with the people who support and mentor us as we navigate through training and beyond? More specifically, how do we communicate how our mistakes make us feel?

We often discuss the appropriate ways to disclose errors to patients: apologize, be honest, and accept responsibility for one’s mistakes. But the medical culture fails to provide an effective platform for us to discuss errors with one another on a more personal level.

Creating a safe environment for discussing errors will help future physicians succeed where others have failed. It will help improve our health care systems, create a culture of safety, and work to eliminate the damaging culture of stigma.

The standard morbidity and mortality (M&M) conference is supposed to offer clinicians a public forum for presenting medical errors and complications. But these tend to cultivate an atmosphere of detachment — trainees impersonally convey details with an attitude of indifference. The M&M conference generally doesn’t offer the opportunity for discussing what lies deeper.

Debriefing represents an excellent step forward. The purpose of this exercise is to discuss the actions and thought processes surrounding a specific patient care situation, to reflect on them, and to incorporate improvement into future performance. The debrief can be an effective forum for addressing the personal toll of experiencing a serious event.

But I’ve found that in the absence of a sentinel event — an unexpected death or serious injury — debriefing is rare. When the dust settles after an error is made or a patient experiences a complication, we often scurry back to our tasks and deal with the psychological aftershocks alone.

Vulnerability is an integral aspect of leadership, something that all physicians should acknowledge. With vulnerability comes strength. From the novice trainee to the most seasoned surgeon, we must all recognize that putting an end to our silent solidarity about errors will empower us to provide better care for our patients, for each other, and for ourselves.

The nature of our practice and the fact that we are human beings means that we will make mistakes. Bad doctors aren’t the only doctors who make errors; rather, they are the ones who refuse to learn from their mistakes. As many of us in surgery say, “The enemy of good is perfect.”

Sara Scarlet, M.D., is a general surgery resident at the University of North Carolina.