While I was in the NCCU, I saw many patients who had life altering, or life ending events. Many of these changes were something that impacted how families made decisions about their day to day life, or how the change would impact their loved one.
One scenario stands out amongst the rest. There was a woman in her late 80s that suffered a stroke that left her unresponsive to nearly all stimuli, even very noxious stimuli. The team, along with palliative care, let the family know that there was unlikely to be any recovery from this one and she would remain in a state that would require constant medical support to remain alive.
There were 2 daughters and the husband present and making decisions about the care of the patient. There was much disagreement about whether care should be withdrawn or if extraneous measures should be done to keep her alive. The father and one daughter were in agreement to withdrawal care, but the other sister was very determined to give her mother one year to recover.
I am not saying one was better than the other, but this does highlight the importance of letting those that care about you know what is important to you. What situations you would want to be given care and when you would prefer to withdraw.
This really highlighted the pressure that family members feel in trying to serve their loved one while preserving their sense of guilt or obligation. I think in this situation it would have been incredibly important for the patient’s wishes to be considered more than just what the family was thinking. This also would have given the family a sense of unity and sense of carrying out their mother’s/wife’s wishes without any concern for whether they were doing the right thing or not.
As someone going into primary care, this emphasized the importance of reminding patients to be open and considerate of these types of situations and what their wishes truly are. I hope that I am able to find the time in my practice to challenge my patients, terminal or not, to truly consider where their values lie and how they define quality of life. This has the potential of saving a lot of grief and hard feelings amongst family members.