制定减轻临终痛苦的策略

分享智慧

共同成长

Full text

Oncology nurses and nurses who specialize in palliative care are experts in being attentive to suffering, even when it is expressed in complex ways, and in finding creative medical and supportive care approaches toward relieving it to the extent possible. For patients who are nearing death, pain and symptom management, palliative care, voluntarily stopping eating and drinking, and palliative sedation are alternatives that nurses may have discussed with their patients at various times. For patients with cancer in most of the world, these have traditionally been the only available options for those who experience—or may be anxious about the possibility of experiencing—intolerable suffering in the later stages of a cancer illness and seek to sustain some control over how their dying process unfolds. 肿瘤科护士和专门从事姑息治疗的护士是关注痛苦的专家，即使痛苦是以复杂的方式表达的，他们也能找到创造性的医疗和支持性护理方法，尽可能地减轻痛苦。对于濒临死亡的患者，疼痛和症状管理、姑息治疗、自愿停止进食和饮水以及姑息性镇静是护士可能在不同时间与患者讨论的替代方案。对于世界上大多数的癌症患者来说，传统上，这些是那些在癌症晚期经历过或者可能对经历的可能性感到焦虑的人唯一可用的选择，他们试图对自己的死亡过程如何展开保持一定的控制。

Engaging in conversations about these options is an exceedingly delicate matter, requiring high level knowledge and skills. Timing, trust, and communication competencies are essential. Although the culture of cancer care and the professional regulatory context in some jurisdictions explicitly try to limit initiation of such conversations to the physicians on the cancer care team, nurses know that it is often in those intimate moments of delivering nursing care, and within the trusted relationships patients have developed with their nurses, that these kinds of questions are raised, or hints are given that such conversations would be welcomed. These kinds of conversations occur as a component of compassionate and caring nursing practice, even when they are not officially recognized or sanctioned as a core expectation for the profession. Therefore, confidence in how to discuss goals of care and end-of-life options becomes fundamental to providing excellent nursing care when patients with cancer are experiencing advanced disease and nearing the end. 参与有关这些选项的对话是一件极其微妙的事情，需要高水平的知识和技能。把握时机、信任和沟通能力至关重要。尽管在某些管辖范围内，癌症护理的文化和专业管理环境明确地试图限制与癌症护理团队中的医生进行此类对话，但护士知道，通常是在提供护理护理的那些亲密时刻，以及在患者与其护士发展的信任关系中，会提出此类问题，或者给出这样的对话将是受欢迎的暗示。这类对话作为富有同情心和关怀的护理实践的一部分发生，即使它们没有被正式承认或认可为职业的核心期望。因此，当癌症患者处于疾病晚期并接近死亡时，如何讨论护理目标和临终选择的信心成为提供优质护理的基础。

In Canada, as with an increasing number of countries over the past few years, 在加拿大，如同过去几年中越来越多的国家一样，

1.recent legislative changes have made medical assistance in dying a viable option for patients. When assisted death became not only a medical care option but also a “charter right” under specific circumstances within the Canadian Rights and Freedoms legislation in 2016, the healthcare community moved quickly to create policies, guidelines, standards, and procedures for practice that made explicit the practice expectations and requirements of the health professions involved. Nurse practitioners were included in that legislation as legitimate assessors for and providers of medical assistance in dying. And while registered nurses were not named as having an official role in the same manner, it was immediately apparent that many of them were deeply involved in this work as the health professionals closest to the patients who were exploring these options. 最近的立法改革使临终医疗援助成为病人可行的选择。2016年，当协助死亡不仅成为一种医疗护理选择，而且成为加拿大权利和自由立法中特定情况下的一项“宪章权利”时，医疗保健界迅速采取行动，制定政策、指南、标准和实践程序，明确相关医疗专业人员的实践期望和要求。该立法将执业护士列为死亡医疗援助的合法评估人和提供者。虽然注册护士并没有以同样的方式被命名为具有官方角色，但很明显，他们中的许多人作为最接近探索这些选择的患者的卫生专业人员深入参与了这项工作。

I have the privilege of working with a research team studying the experiences of registered nurses and nurse practitioners with respect to these new processes, practices, and experiences since assisted deaths began in Canada. The members of our team have all been profoundly moved by how seriously these nurses have taken their responsibilities in this regard. Nurses are expected to provide an envelope of care to surround the entire process, from the patient's first tentative questions or overt requests, to the planning associated with the process of assessing eligibility, to the deliberations with the patient (and often family) around timing and orchestrating the actual death event. 我有幸与一个研究小组合作，研究注册护士和护士从业人员自加拿大开始协助死亡以来在这些新程序、做法和经验方面的经验。我们团队的成员都深深地被这些护士在这方面所承担的责任所感动。护士应该提供一个围绕整个过程的护理信封，从病人最初的试探性问题或公开请求，到与评估资格的过程相关的计划，再到与病人（通常是家属）一起讨论实际死亡事件的时间和安排。

2.In many instances, patients with cancer began to envision the kind of death they would like to have as a central focus within their goals of care. These considerations went well beyond the more conventional “getting your affairs in order,” and might include scheduling the procedure at a time and place that held special meaning for them, arranging for the important conversations they wanted to have with loved ones in advance of the event, explaining their last wishes and expressing legacy messages to their communities. This constituted a very different kind of planning process than has traditionally been the case with a conventional unplanned death, and a very different kind of role for cancer nurses to support these patients and families through it all. Essentially, if this was the direction patients were determined to take, then nurses did all in their power to create the conditions under which a patient’s individualized wishes for their dying scenario could be respected. 在许多情况下，癌症患者开始设想他们希望的死亡类型，作为他们护理目标的中心焦点。这些考虑远远超出了更传统的“把你的事情安排好”，可能包括在对他们有特殊意义的时间和地点安排手术，安排他们想在活动之前与亲人进行的重要谈话，解释他们的遗愿，并向他们的社区表达遗产信息。这构成了一种与传统的非计划死亡情况非常不同的计划过程，癌症护士在支持这些患者和家庭度过这一切方面也扮演了一种非常不同的角色。从本质上讲，如果这是病人决心要走的方向，那么护士们就会尽其所能创造条件，让病人对自己临终情景的个人愿望得到尊重。

Nurses also quickly came to realize that, while highly educated and assertive patients might well feel sufficiently confident to formally request conversations around assisted death, those with less confidence or understanding of the system might be intimidated from entering such conversations. Therefore, from a social justice perspective, there seemed a critical role for nurses to augment their conversations with patients and families about goals of care—to ensure that all patients were equally informed—to the extent that they wanted to be—about their available options without ever pressing any particular direction on how those conversations played out. 护士们也很快意识到，虽然受过高等教育、自信的病人可能会有足够的信心正式要求进行关于协助死亡的对话，但那些对系统缺乏信心或了解的病人可能会受到恐吓，不敢参与此类对话。因此，从社会公正的角度来看，护士似乎有一个关键的作用，那就是增加他们与病人和家属关于护理目标的对话，以确保所有病人都被平等地告知，在他们想要的程度上，关于他们可用的选择，而从来没有对这些对话如何进行施加任何特定的方向。

3.If this option is considered a charter right for those who experience irremediable suffering and meet other eligibility criteria, then nursing is called upon to ensure that our healthcare system plays its part in making access to it equitable.  如果这一选择被认为是那些经历了无法补救的痛苦并符合其他资格标准的人的一项特许权利，那么护理就被要求确保我们的医疗保健系统在使人们公平地获得它方面发挥作用。

As nurses learned to have those delicate and nuanced conversations with their patients, many came to realize how complex and difficult discussions about suffering can be. 随着护士们学会了与病人进行微妙而微妙的对话，许多人开始意识到关于痛苦的讨论是多么复杂和困难。

4.Suffering takes many forms—physical suffering, psychological suffering, social suffering, including the full range of anticipatory grief and dealing with all that has been lost. These feelings are often deeply experienced and rarely fully articulable. Being witness to and respecting patients within their suffering can take an emotional and moral toll on nurses.  痛苦有很多种形式--身体上的痛苦、心理上的痛苦、社会上的痛苦，包括各种各样的预期悲伤和处理所有已经失去的东西。这些感觉往往是深刻的经验，很少充分表达。目睹和尊重病人的痛苦可以采取情感和道德的代价护士。

5.Working out when and how to deflect such conversations, refer them to others on the team or stay with the patient in the moment at which a conversation arises becomes a painfully difficult decision, and nurses are highly aware that their behaviors and responses in those moments may make the difference between the patient attaining their preferred death experience or potentially having further suffering because of lack of control over the way their life will end. 找出何时以及如何转移这样的谈话，将他们转介给团队中的其他人，或者在谈话出现的那一刻留在病人身边，成为一个痛苦而艰难的决定，护士们高度意识到他们在那些时刻的行为和反应可能会使病人获得他们喜欢的死亡体验或由于缺乏对他们的死亡方式的控制而潜在地遭受进一步的痛苦之间产生差异。生命就会终结。

While it is unlikely that guidance on such conversations can ever be prescripted or standardized, it seems apparent that we in the oncology nursing world will need to be prepared to take on this work—to ensure that our patients have access to the support and information they need, and where assisted death is an option, have a path through toward considering it. Over the coming years, this topic will need to be a focus of our research, our continuing education, and our collegial conversations as we wrestle with the nuances of language, timing, and information, each within our own national and regional regulations, customs, and laws. 虽然这种对话的指导不太可能被规定或标准化，但很明显，我们肿瘤护理界需要做好准备来承担这项工作--确保我们的患者能够获得他们所需要的支持和信息，如果安乐死是一种选择，那么就有一条考虑它的道路。在未来几年，这一主题将需要成为我们研究、继续教育和大学讨论的焦点，因为我们要在各自国家和地区的规章、习俗和法律范围内，努力解决语言、时间和信息的细微差别。

As a professional community, specialist oncology nurses are skilled in many aspects of delicate communication. They work hard to know how to support patients and families in balancing optimism and pragmatism, how to help them understand the uncertainties of cancer diagnosis and treatment planning, and how to help them manage the complexity of physical symptoms and emotional experiences across the cancer trajectory. And now, this new set of powerfully influential challenges is being thrust upon us—these conversations that may well have a direct bearing on how the end of the patient's life with cancer will be enacted. 作为一个专业群体，肿瘤专科护士在微妙沟通的许多方面都很熟练。他们努力工作，懂得如何支持患者和家属在乐观主义和实用主义之间取得平衡，如何帮助他们理解癌症诊断和治疗计划的不确定性，如何帮助他们管理癌症轨迹中身体症状和情绪体验的复杂性。而现在，这一系列新的强有力的挑战正被强加给我们这些对话很可能直接影响到癌症患者生命的终结。

Nursing is a highly trusted profession. And we nurses work closely and intimately on life and death issues with some of the most vulnerable of patients. Ultimately, therefore, the oncology nursing community must work toward ensuring that those advanced cancer patients whose suffering is not remediable, and who seek reassurance that they will be supported throughout their journey with cancer, will not be abandoned in their search for the end-of-life options for which they may be—or become—eligible. These are changing times and together we can change to meet them. 护理是一个值得高度信赖的职业。我们护士在生死问题上与一些最脆弱的病人密切合作。因此，肿瘤护理界最终必须致力于确保那些痛苦无法治愈的晚期癌症患者，以及那些寻求在整个癌症治疗过程中得到支持的患者，在寻找他们可能符合或成为符合条件的临终选择时不会被放弃。时代在不断变化，我们可以共同改变，迎接时代的变化。

THE END