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Excellent and well written chapter on a troubling subject! Thanks June!
Ethics in the realm of advanced directives seems to be my greatest concern when it comes to advocating for patients rights simultaneously with their safety and well being. . As a telephone triage nurse, I find myself in so many dilemmas when it comes to patients whose capacity to make decisions is questionable, however the patient nor family have prepared any advanced directives. Often more than not, the family identifies the need for intervention but has the expectation that is it the healthcare providers and system are responsible for assuming control over the patient's rights. As a nurse, I have to constantly remind myself that the family's report alone of the patients behavior and decisions cannot be used as a physician or nursing assessment. Families may have preconceived notions on how they expect an elderly family member to behave, and acting against those notions does not necessarily mean the patient does not have capacity. I find it most helpful to revert to the state law to identify who has legal right to assume healthcare surrogacy over the patient, then guide the family in the direction towards securing documents to support this. By doing so, it allows the patient/ family to acknowledge the role and limitations of the family, the healthcare providers and system when it comes to advanced directives and capacity decisions.
We serve a large population with English as their second language and the Interpreter services have been great resource. Since my encounter with patients are mainly telephonic, my dilemma is how could I be certain that my message was conveyed by the interpreter as I expected. If this was a face to face, I would have picked up any non verbal hints and would have the opportunity to have follow thru questions to make sure things have been clear enough for the patient. In the same way patients would have a chance to ask questions further; as opposed to a telephonic conversation where patients may feel their questions can wait till they see their provider in clinic. Another issue is concerning advanced directives - 'who makes the decision', when there is none by the patient themselves. There are cultures that this is not known or thought as not necessary. They may have the spouse or the child or a relative who is assigned as 'responsible for their care'. I have also seen family members with conflicting views or understanding with deciding what is best for the patient. With this, decision making will then involve discussions with the team - MD primary provider, family members, nurse and maybe social worker, interpreter, etc. It may be difficult to set a time for everyone to sit together or could be a time consuming back and forth with each one involved. This could be a more stressful situation and lead to delay of care.
This article is such a great read!
An ethical dilemma that I have seen in outpatient infusion is several patients that are end of life expressing their desire to stop getting blood transfusions in the setting of a cancer diagnosis where the patients bone marrow is not producing adequate blood cells. I think the problem here may be that critical conversations have not taken place with the patient, their family, and their doctor. The nurse would need look at both the medical facts and non medical facts, like the patients diagnosis and prognosis and if the patient has an advanced directive and what their beliefs and wishes are. If the patients has any family members that are involved in making this decision or if the patient is capable of making this decision on their own. Are the patient and family aware of all these facts and what the implications would be for them if they choose to stop treatment and if their family is aware and ok with this decision. Clarifying all information with the patient and family that may be involved. The nurse will need to determine if everyone involved is acting in the best interest of the patient, if everyone is fully informed about the medical diagnosis and options for treatment are presented without bias or judgement. Finally is the patient free to make an informed autonomous decision about their health moving forward. This will help the nurse to present options to the patient and family in order to help them make an informed decision about their health and next action to take moving forward. Finally, the nurse may need to follow up with patient and family about their decision and if they need any further clarification.
The most recuring theme that I have seen in the infusion ambulatory care setting would be whether or not to continue with a specific type of infusion even though end of life is near. I see patients that come in frequently for blood transfusions to help with symptoms of their current cancer diagnosis. There is definitely ethical concerns when a family member wants the patient to continue to come in for these infusions when the patient clearly looks exhausted and may not want to continue with the routine infusions. This type of dilemma I feel can create some mixed feelings and emotions within the nurse and can lead to some internal conflict.
An ethical dilemma that I foresee happening a lot with my Spanish-speaking only patients is when they have one of their adult children come in to interpret for the pt. If this happens, I would use the steps of ethical decision-making to identify the patient's need for additional assistance, but recognize that we need to use a qualified interpeter for the visit, as we can not rely on a family member to interpret. many times a patient wants to use a family member because they are more comfortable doing this, but to avoid mistakes and to make sure the correct message goes through, I would use an authorized interpreter.
I enjoyed the example of the POA wanting to continue treatment where the patient does not, this is a real example of what we would see outside the hospital
I find that patient’s ability to seek care in an ambulatory care clinic or facilities has helped decrease the number of ER visits, when appropriate. I do find however, that some patients can not differentiate between routine, urgent and emergent and end up in the wrong place a lot of the times. Working at an urgent care clinic, I encounter a lot of patients with life threatening issues that prefer to go to an urgent care to seek care vs ER because of the wait or not knowing the limitations an urgent care has vs ER. This as well follows non compliance from some patients with not following up with PCP after a visit at Urgent care for their chronic diseases. From an outpatient setting there is only so much that can be done if patients are not willing to comply with treatment plan or follow up. This raises an ethical issue and concern for the patient’s well being. Communication is essential in the continuation of care for all patients seeking care at an ambulatory care facility. Whether it is follow up calls to patients, provider to provider communication or forwarding notes following the visit at the ambulatory care facility to Primary care office or other specialty so that patient’s may continue with the discussed treatment plan.