Case of Non-Disclosure

[mwadmin]

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.

[Anonymous]

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.

[Anonymous]

“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.

[Anonymous]

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.

[Anonymous]

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

[Anonymous]

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.

[Anonymous]

This is a very difficult position for a social worker to find themselves in, especially if that social worker takes a more critical, client centred care approach to practice. It is very difficult to work for an agency that has policies in place that go against your fundamental values but all of us as social workers will find us in these positions multiple times throughout our careers. I have found myself in a similar situation at my job as a counsellor assistant working in a group home for adults with intellectual disabilities. For example, one of my clients mothers was sick and dying of cancer, with only months left to live. But, my clients next of kin (her sister) advised staff that my client was not to be made aware of this because it may cause undue stress upon her. However, as someone who is educated in anti-oppressive car and client centred care, I realize the damage that this is doing to my client who is completely capable of making these decisions for herself. By taking away this decision from her we are taking away her autonomy. Respect for autonomy is one of the fundamental guidelines of clinical ethics. I believe strongly that respect for the freedom to make choices should be accorded to all persons with disabilities, no matter how much support they need. And my client was a very high functioning individual. This story resonates with me because we want to be advocates for our clients and this social worker is restricted.

[Anonymous]

This is a very difficult situation for Elizabeth to find herself in. Because social workers are tasked with maintaining the inherent dignity and worth of persons, I think that it is not unexpected for her to feel uncomfortable with the family’s decision. I do wonder why the family has made this decision for their family member and why “the hospital” is supporting them in their choice to not tell the person what is going on.

I would suggest that Elizabeth do a few things. First, I would want her to find out why the family has made this decision. If she is unable to speak to them directly about the topic, I would suggest she speak to her supervisor and her team at the hospital to find out more about why the family has made this choice. Since many managers in a hospital setting are not social workers and wouldn’t necessarily apply a social work lens to the situation, I would also suggest she reach out to her Professional Practice Lead – the “chief” social worker for her hospital whose job involves helping their professionals make complicated practice decisions. Third, I would also advise her to get in touch with the ethics department at the hospital because the ethics department can work with the legal department and the care team to find a way for workers to maintain their professional codes of ethics. The ethics department spends a lot of time supporting workers who feel moral distress at the choices in cases where a patient is unable to consent and a substitute decision maker has been appointed. They are especially skilled at helping hospital workers navigate these tricky situations. There is almost always at least one social worker on the ethics team, which might help Elizabeth. Additionally, because the ethics department is within the legal “circle of care”, she will not have to worry about maintaining confidentiality and can speak with them about specifics of the case. Fourth, if she is still uncomfortable with how the situation is progressing and feels that the family is not treating their family member in an ethical way and that the hospital is complicit in this, I would suggest she contact the NSCSW for advice on her options and obligations as a social worker in this situation.

Situations that put a worker in moral distress can be very taxing and a drain on a person’s compassion resilience. I would commend Elizabeth on her choice to spend time “sitting with herself” and using self-talk as a positive coping strategy. Acknowledging that something is challenging before we start can be a great way to mentally prepare for work. I hope that she also makes the time and effort to be able to debrief with a trusted person after her interactions with the family. I would encourage her to keep an eye on her levels of compassion fatigue and make sure she is implementing self-care strategies (even small ones!) on a daily basis when working with this family. She might even consider taking the Pro-QOL survey found at http://www.proqol.org and completing it periodically as a way to check in on how she is feeling about her work in general. If she finds this struggle starts transferring to her ability to work with other clients or “be herself”, I would urge her to contact her manager if she feels comfortable doing so. Finally, I would remind her that this situation is a tough one and that by analyzing her values, assumptions and beliefs about the case, she is doing a good job at being a critical social worker, even if she feels constrained by the realities of her agency’s mandate.

[Anonymous]

I found this case incredibly difficult to read and comprehend as a result of my own personal values, which I think largely align with Elizabeth’s. I personally place a high degree of value on client autonomy, especially around healthcare and end-of-life decisions. To me, the fact that the patient’s family withheld such crucial information as his diagnosis is very concerning, especially given that his disease is terminal and that he is in considerable pain. In these cases, I truly believe that a patient has a right to know their diagnostic information, regardless of what the family thinks is in that patient’s ‘best interest.’ However, the fact that the healthcare facility where the patient in question is receiving care accepts of the family’s decision to withhold his diagnosis is the most troubling aspect of this case to me, as this agency-level acceptance detracts from the value of client-centered care that I hold as being paramount. I therefore know that if I found myself in Elizabeth’s position that I would therefore face a considerable ethical dilemma, and one that I would have to act on in some capacity.

Prior to deciding to take action within this case, however, I think I would first need to examine the entire context of the situation at hand and reexamine both my ethical stance and necessary actions from the information that I could gather. Information that might be missing that I think is important to the case as a whole includes the age of the patient (are they a child? If so, what age are they? Have they demonstrated competency over their care?), the cognitive capacity of the patient (for example, does the patient have dementia? Are they otherwise cognitively delayed? Most importantly-do they have the capacity to understand their health, the concept of death, etc.?) and/or any cultural values that are at play that may be influencing the family’s decision. I think, as a whole, it is crucial to consider the larger context of this case prior to acting on it, which is something I believe relates strongly to Mullaly’s (2010) discussion on situation-based ethics and the importance of making ‘ethical’ decisions that reflects a full understanding of the entire context of a situation. Indeed, even within the context of the CASW code of ethics it is important to consider the larger context of a situation in order to make truly informed ethical decisions that reflect an accordance with social work values, especially social justice, respect for personal autonomy, and respect for dignity and worth of all persons. If any of the aforementioned variables exist relative to the patient, I think a much larger discussion around the ethics of the situation and the harm being imposed on the patient would be necessary.

Should no other potential variables exist within the case (as none currently do as the case is being described) after additional examination of the patient’s context, however, I believe I would take a number of actions in the case, as I perceive the choice of both the family and the agency to withhold information from the patient to be considerably unethical. For one, I would first talk to the patient’s family, so as to enhance my understanding of the reasons they are withholding the patient’s diagnosis. I think I would then talk to them about the importance of the patient’s right to be involved in their own healthcare and to be fully-informed of any decisions being made. I would also have lengthy discussions with the other members of my healthcare team regarding our roles as healthcare providers and our ethical responsibilities to act within the autonomy of our patients—especially, as noted, if none of the aforementioned factors (culture, cognition, age) are coming into play. Throughout these processes I would attempt to advocate for the patient who, at the end of the day, is the primary client in which I am serving as part of the healthcare team. If no solutions could be reached or justifying context presented at both the family and the healthcare team level, I would likely discuss the case with my supervisor (which would maintain the client’s confidentiality insofar as ensuring I only discuss the case with the persona that I am working under) to see if they could provide any insight into actions that could be done or the agency policies that are allowing for the non-disclosure of the patient’s diagnosis. In taking these actions, I would hope that a solution more in line with my values and the values of the social work profession as a whole could be achieved.

That said, I also think that this situation brings attention to an additional, important role of the social work profession at the agency level—namely, creating institutional, policy-based changes to better reflect the interests, agency, autonomy, and dignity of the clients that we work with. As such, if I were the social worker in the case, I think an additional role that I would undertake is
looking at the larger, institutionalized policies that are affecting the client in question, why those policies exist, and the extent to which room exists for changing those policies. I would then try to find allies within the agency that feel the same way that I do about the policy to try to advocate for changes to be made.

Jordan Z

References

Mullaly, B. (2010). Challenging oppression and confronting privilege 2nd ed. Chapter 9. Anti-oppressive practice at a structural level (pp.259-286). Don Mills, Ont: Oxford University Press.

[Anonymous]

This case really made me stop and think. I made think about the lens I am viewing this case through and it made me think about what is the mandate of the social worker in that hospital setting. I me autonomy is very important. I believe that each person has the right to make the choices best for them, but I also acknowledge that is a very western way of viewing things.

Similar to some of the comments here I would sit down and speak with family in detail, and get the whole context of what is happening. There are many cultures where when a person is very sick, it’s considered best to not tell them and that is how the family shows love and care for that person. Who am I do say how someone should show love and care to their family, just because it’s not in the way I would do it. When viewing this through a trauma informed (a loved one with a terminal illness is a significant trauma) Culturally competent lens the landscape may change.

As well I want to make sure that I’m enforcing or oppressing this family with my viewpoint, especially if they are from a marginalized population, as they systems already oppressing them are great. I would want to make sure that they family had the full understanding of what they were doing and the ethical implications that govern the system we must abide by in the current culture, and I have the responsibility to find out why they are going this way and hiding the truth from the patient.

I would inform my supervisor though and let the family know I have done so. If I want to build trust with this family I must be open and honest with them in a supportive and professional manner. If when I come to understand why they are holding back the truth and I can not rationalize it enough to do my job properly and effectively, as my own bias may come into play, then the supervisor knows what is going in and can easily step in and take over with very little interruption to the family or the patient.

It is a difficult situation and one I would not want to be in or a part of, but does happen.

[Author]

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