What Do the Patient and Family Know
It is important to know where the patient and family are starting from when you initiate a goals of care conversation. Otherwise it’s like trying to find your way across town without a map. They may have information or beliefs that you need to know in order to help.
Remember, this may be the first time anyone has asked them to discuss these questions.
There may be different even conflicting goals of care. It is important to give everyone involved — patient and family — a chance to say what they want. Goals may be based on misinformation or denial — however until everyone is “using the same map” it will be difficult to move forward. Patients and family look to you to provide information and guidance — but mostly to listen.
- Watch the video below for an example.
Ask patients and families permission to discuss these topics. This provides a nice way in to the subject, and gives families permission to say “no”. Most don’t say no, but may say something like “let’s wait until my sister arrives…”, etc.
Also ask about information preferences, or in other words, how much information about what is likely to be ahead would the patient like to know at this time?
What You Can Do
You can provide information about the current situation, the underlying disease, prognosis. Families are often surprised to learn that a bed-bound person with advanced dementia now with sepsis will probably not “get better.” Provide information in short chunks, pausing often to check understanding.
Discussion: What Do the Patient and Family Know
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The doctor is more patient with the son than i would be… but i think it’s good for understanding the dynamic here… good strategy to listen and let them debate…
family being overbearing
The MD is understanding in listening to the patient and family member at bedside, however the family member is not letting the patient speak for himself,
family dynamics are often so complex and may require multiple interactions wiothout getting to the same goals of care
know patient’s desires first. sometimes family isn’t supportive
Focus on advocating for the patient.
The doctor should speak to the patient alone and then with the son.
There is definitely a “clash” between the patient’s and the son’s perspective on the current situation. The physician should give an opportunity for the patient and the family member to express what the illness experience means to them without interruption.
Doctor should tell the son to let his father speak without interruption and to show his father respect.
the denial of the son, not letting him let go.
Focus on and advocate for the patient’s desires
patient must have the final say but it also important to educate the family member and include them in the process
Listen to the patient.
Both sides are importanta however patient is nice, cooperative not delirious and not demented. I would take this in consideration
Always listen to your patient and understand the needs.
the patient has the right to make these kinds of decisions
pt and family input and understanding is imperative
First help with symptom control.
Typical scenario of family indenial. the patient knows his body and how he feels. always listen to the patient and encourage the family to do so to
very common situation
might be good time to introduce social worker or support systems. Listen to both family and patient and work on their knowledge and willingness to listen almost like a mediator between two so they are aware of what everyone is feeling
this family member is in denial and has to come to terms
Question if family understands nature of loved ones disease
family member is in denial
this happens all the time when family member cannot let go.
Difficult to identify goals. Separate and Private conversation with family member and pt required
Difficult to assess pt goals sometimes when family members are present
SON IS IN DENIAL. DAD FEELS THAT HSI TIME IS COMING AND WANTS A DIGNIFIED END OF LIFE CARE.
understand patients wishes
talking to both the dad and son together to understand where they both are
I think having a conversation to ensure everyone is on the same page would be beneficial.
need to listen to the patient
family and patient need to be on the same page
It is important to listen to the patient’s wishes
need active listening
Ask to speak to son in private
pay better attention
listen to both pt and family concerns, may be speak to them separately
active listening to pt concern is important
Important to convey to son that father’s wishes trump family’s wishes and get the son an board before thing turn.
Important to convey to son that father’s wishes trump family’s wishes
family and pt on different pages with respect to futuristic goals
Relative/patient requires further realistic counseling regarding condition; adjusts expectations accordingly.
patient and family not on same page – difficult place to be discussion would help
stressful, listen to patient, family has not accepted it and maybe needs more information
Obviously there needs to be more open dialogue between the father and son. The son does not seem to be ready to accept the father’s goals of care, which is unfortunate for both of them. Helping them to understand each other’s points of view and managing acute symptoms for the patient would be what is needed at this point.
it is challenging when family & patient has conflicting views of what is happening.
we’ve all been in this situation with family members. stressful
Sometimes the goals are different for family and patient
Interesting to see the difference in view, it will be challenging to get both father and son into a similar plane of discussion.
there is a discrepancy between what the patient wishes and expects and what his ?son expects. This will need some careful navigation to clarify the situation based on the physician’s experience and knowledge of the patient’s condition. The son may not be in a position to understand that his father is entering a new phase of his terminal illness and that goals of care are shifting.
He lets the pt realize his condition.
The patient appears to understand his prognosis and identified his goals of care based on this. The son appears not to understand either the underlying disease process or prognosis. This often stems from alot of background that we are often not aware of and of course hope that their loved one will beat things just one more time!
I think it is often harder for family and they are not ready for conversation because they want to help and have hope.
Need to establish a common understanding of disease
it is difficult when family & patient has conflicting views of what is happening.
conflicting views on situation.
the son has not yet come to terms with the patient’s status and is not listening to his father’s wishes
perhaps goals of care discussion with patient alone
then recap of the conversation with the son to explain
Further clarification with both or son as needed
This is a common scenario. Furthermore, there is usually other family members (other daughters/sons that live outside the city, wife etc) that may have different opinions still. I find it extremely unlikely that we will resolve and come to a consensus in goals of care in ER in such situations. In such situations, I believe it’s our job in ER to start the conversation to aid the admitting service in days to come with further conversation but to expect ER to “nail down” a GOC is unrealistic.
this necessary to take the time to talk to family about evolution and prognosis
Families should be encouraged to have open and honest conversations regarding these topics long before a decision needs to be put to paper.
conflicting goals is common
hay que tomar el tiempo para explicar
clearly, honestly, friendly
la explicación del problema es básico
honesty and patience
The concept of finding out what the family and pt. know already is a good one. In this scenario the physician was presented with the conflicting ideas of the pt. and his son which is also a good baseline to work form. I agree that the conversation at some point needs to be with the pt. only and possibly the physician can identify the pt.’s goals and advocate for the pt. with his family.
In a situation such as this, I think the physician here has to negotiate the treatment goals with the pt. and his son. probably the son needs more information about the nature and the natural history of hid dad problem.
There is a disconnect, and the son has poorer insight than the patient, with unrealistic expectations.
conflict between patient and primary care giver (son in this case)
The son is having a difficult time dealing
this is a typical scenario that will take a lot of patience and sensitivity
the son doesn’t seem to understand what the prognosis it
The son seems to be in denial, patient seems to have a better understanding of his condition and wants pain control. Family and patient are not on the same page. These goals need to be addressed with family while patient is able to make decisions for self.
I think it’s also key to speak to the patient alone, he is cognitively intact an has a good understanding of his condition. The son interrupted him on multiple occasions and in fact he may be holding back the severity of his symptoms or his wishes so as not to upset his son.
the son is unaware and still has hope, addressing his concerns, allowing him to express his concerns and being empathic that he may loose his father may help calm him, which may help him to listen to his father
This patient seems to have a better handle on his condition then his son who seems to be in denial. It is difficult to have these discussions with this type of family member but I think as long as the patient is competent, we need to respect his wishes. As well, having the social worker involved with these types of discussions can be helpful.
I think his symptoms are not affecting his judgement. I think this would be a good time to ask the family member to stop and listen to what the patient is saying, and reflect on respecting the patient’s wishes
I find it difficult when faced with a family member/SDM who seems to have unrealistic goal/expectations when the patient is unable to voice their own wishes/goals, ie in the setting of advanced dementia. I often ask the family what the patient would want in the current situation (poor condition, progressive disease, dependent for care/ADLs, severe cognitive impairment, poor prognosis etc), but find it very challenging when the goal is still “recovery”, wish wishes for full resuscitation.
I think I would use the strategy of having the patient explain to me, with the sone listening, why this is different and what he really wants.
Certainly conflicting goals of care between the two. There might be misperception from the son but it is important that his views be discussed. hopefully will help increase son’s understanding/denial and provide closure to both patient and son.
I think is clear that the patient is aware of the situation and he feels this time is different and he just don’t want to suffer. The son in the other hand might not know or is on denial of the severity of the situation.
the patient wants symptom control can’t decide anything else for now, I would focus on symptom control first then continue the discussion
the patient’s answers are overriden by the son who blocks the interaction it is hard to get a sense of what their goals are