Case of Non-Disclosure

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This topic contains 5 replies, has 6 voices, and was last updated by  ngozi.otti 6 months, 3 weeks ago.

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  • #122
    mwadmin
    mwadmin
    Keymaster

    The Case of Non-Disclosure

    Elizabeth was a social worker in a hospital. A patient had recently been diagnosed with an end stage lung cancer and the “family decided they didn’t want the patient to know any of the information.” So while the patient didn’t understand why he felt so sick, the family did not allow the physician or the team to explain to him what was happening. Also, the family was planning and making choices about his care without involving him. For Elizabeth this was a “big personal issue” because of both her support of the codes of ethics and her own personal ethical code that “people should be able to autonomously make decisions.” She believed that “people need to know… and should know information” pertaining to their own lives.  In terms of her response to this situation, Elizabeth expressed “it is difficult for me to interact with those patients and families knowing that they’re making this choice. And …the hospital is supporting them in that choice.” The organization’s support of the family’s choice over that of the patient contributed to the difficulty she had ethically with this situation. When asked what she did to personally be able to continue doing her work, she replied, she takes a “good period of time” to sit with herself and she uses “self-talk” with statements such as “you don’t like this” and “it’s going to be a challenge,” to prepare herself to be able to work with the family.

    #207

    LisaF
    Participant

    This is an incredibly difficult case to stomach. I had an immediate visceral reaction to it which tells me that I need to suspend those thoughts and try to calmly reflect on the circumstances.
    If I were the social worker, it would be important that I was not combative in my approach, even though that is my instinct upon reading this case.
    I would first want to be sure that the patient had given power of attorney to his family. I assume that this is the case as the hospital would have been breaking the law by withholding his diagnosis otherwise. However, that would be my first form of action, to determine who has power of attorney for him.

    Next, I would like to understand why his family feels so strongly about withholding this information from him. Does the patient have a history of acting out or having adverse reactions to bad news? Could the diagnosis significantly reduce his life expectancy?
    I would want to have a warm and genuine conversation with his family, or power of attorney, in which I come to a better understanding of why this information is being withheld.

    That all said, it is unlikely that I will find their reasons adequate as I feel very strongly about autonomy and the freedom of information. I know that I would hate to be left in the dark and do not like the idea of denying someone that basic right.

    My next step, if I could not comfortably sit with the family’s reasons, would be to speak to my supervisor. I would explain that the situation is in opposition with the social work code of ethics and my own comfort. If nothing could be done I would consider meeting with the family to explain the conflict between their decision and my professional ethical obligations. I would be willing to continue working with them with the interest of the patient as my focus. However, I am not sure that I would be able to keep working with them without letting them know that I am opposed to their decision.

    That all said, I am not actually in this situation. These are not real people to me. I normally strive for common ground and would hope that there would be some way of finding it with this family at this incredibly difficult time. I would try to be warm, gentle and empathetic with every difficult conversation that I felt had to happen.

    #211

    angellawhite
    Participant

    “Helping patients and families come to terms with bad news is an essential role of the social worker on a medical or palliative care team”(McIntosh, 2006). It is likely that cases like the one in question will come up from time to time and dealing with different families can be difficult and is sometimes a complex process base on family dynamics.
    I agree with most of what Lisa had to say, and I too feel sad that the patient is in the dark about his prognosis and diagnosis. However, we need to bear in mind that not everything is always black and white, and what might appear as a simple task may prove otherwise.
    My first suggestion would be for Elizabeth to talk to her supervisor about this case. If there is no supervisor available talk to a colleague who might be able to give you some insight and suggestions as to how to proceed. Of course these suggestions would be in line with the code of ethics. Your colleagues are great resources and might be able to give you tips on how to turn around the patient’s family decision.
    I would aslo suggest that Elizabeth meet with the family and allow them to express their concerns about disclosing. This will give Elizabeth a better understanding of what is going on and understand the family dynamics a little better. Elizabeth can also used this opportunity provide family with the benefits of keeping patients in informed and also the risk involved in keeping the illness a secret.

    Its never easy but with practice and good judgement you will deal effectively with each case.

    #213

    vicky9201
    Participant

    The immediate gut feeling I get when reading this case is discomfort. It is not usual to hear about treatment plan decisions being made without consulting the client that is recieving the treatment. In the Western world autonomy is coveted, and independent right to choice is often emphasized. To hear something that completely contradicts these values seems absurd. However, as I suspend my feelings I begin to think about the reasoning the family may have for these choices. I would want to know what has contributed to the family choosing to make this decision, which would make it important to sit down and have a conversation with the family discussing this. What is their positionality? Is there a potential cultural influence fueling these decisions? Is the illness so far that the patient will not be bale to comprehend the information? Being able to listen, comprehend and understand the reasons behind choices can often give new perspectives on the situation which help us to appreciate decisions rather than fight them. Additionally I would want to explore with the family if there is any possibility for movement around the issue, whether there is a certain amount that can be revealed to the patient, and what the implications of this may be. There are many factors that could motivate a family to make these choices, these factors would most definitely influence how I would handle the situation.

    For instance if the family has made this choice based on cultural values, I would likely approach this situation the same way the worker in the case study has, by recognizing our difference in opinion, and doing some self work to be able to accept this. In Western medicine, an abundance of information is considered a good thing, doctors often believe this helps individuals accept diagnosis and make informed decisions, however some cultures view this as a families right to decide (Oliffe, Thorne, Hislop, & Armstrong, 2007). One patient who recieved more information than they would have liked during their cancer treatments described it as having “chrush[ed] the spirit” (Oliffe et al., 2007, p.8). Just because my values are different than a patients, does not mean they are right, it is important to explore the basis for decision making and explore why the family is making this choice.

    References

    Oliffe, J., Thorne, S., Hislop, T.G., & Armstrong, E.A. (2007). “Truth telling” and cultural assumptions in an era of informed consent. Family and Community Health, 30(1), 5-15.

    #235

    Forbes
    Participant

    This case is incredibly complex and multi-layered. This reminds me of what we discussed in class today regarding deciding who your client is. In this situation, is the client the patient? Or the patients family? Or is the patient and their family, collectively? I believe the patient is our client, and not there family. However, this sparked some interesting inner dialogue.

    This reminds me of a personal situation I went through two years ago with my grandmother. At that time she was 92, and was rushed to hospital because of a blood clot in her lungs and heart (pulmonary embolism). The doctors said she was too old to undergo heart surgery, and if the blood thinning medication didn’t work to dissolve the clot, it would only be a matter of time. These situations are similar because in both cases the client was presented with an end of life decision. My grandmother was aware of her situation, and this fictitious client was not. However, even though my grandmother was aware of her situation, she turned to her children and told them that it was their decision, and that she could not make it. They felt a responsibility to honor her wishes to let them decide – she had already lost 4 our of her 8 children. With this experience, I could understand why the family was making the decision.

    However, I believe from an ethical standpoint, the health professionals and family have no right to with-hold information about an individuals health. This seems intensely unfair to the autonomy of the patient, as someone deserves to know when they have final stage (seemingly uncurable) cancer. My grandmother was informed of her situation and made a decision herself – maybe not the one people would want her to make, but one none the less. I am happy to report that the medication worked and my grandmother is still being a rockstar at 94.

    There could be cultural reasons for the family making the decision – perhaps they are located in a collective world view where families make these kinds of decisions. This is definitely a possibility that we cannot rule out as practitioners.

    I believe my first step would be to approach the doctor in charge and express my concerns about the patient not knowing their diagnosis, and how it is a violation of privacy, autonomy, and I’m sure breaks many hospital regulations (although I realize these rules are broken all the time, and situations like these are sadly common). Hopefully they would understand the concern and act accordingly.

    This is a tough situation that I will definitely be thinking more about in the future!

    Forbes MacQuarrie

    #238

    ngozi.otti
    Participant

    This is a very hard situation especially as a social worker whose commitment is to the individual client as defined in a North American neoliberal environment that sees patients as isolated individuals from their families. However, in this case, it would be important to know that the client is not only the patient but Elizabeth’s client has now expanded to include the family. Seeing the family as also a client would help see opportunities to discuss the implications of their decision, to understand the reason for their decisions and to explore cases where families have told patients the truth about their health status and working together.
    Also, I will discuss this issue with the organization since the decision is being supported by the organization. The organizational values and commitment to honesty and integrity of service is what is at stake here. If these practices are reflected in the organizational values and I have agreed to work with this organization, I will play by their rule while acknowledging these practices are unethical.

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