Of the several patients that I met during the palliative care and hospice rotation, I noticed that social support seemed to be a big factor in patients’ interpretation of their experience. Some patients had family members with them at their bedside throughout the day and some did not. This could be for a variety of reasons. However, patients who appeared to have less social support seemed to have a more difficult time understanding and coping with their illness.
One patient in particular seemed to be in denial about the severity of her illness. She was in palliative care and experiencing complications from liver failure. Throughout the initial discussion, she mentioned supportive neighbors who could help her when she went home. The day-to-day tasks that may be difficult for her were talked about as if they were of little consequence. Often minimizing her symptoms, it was as if she was trying to protect herself from the gravity of the situation. I also wonder if this was a way of protecting her health care providers as well. The neighbors and friends she spoke highly of had not come to visit her and one friend was absent from a meeting that she had previously agreed to attend. This could all be coincidence and just a matter of timing. But I couldn’t help but feel that this patient was facing a difficult diagnosis with little, consistent social support. In a way, her minimizing and stories of helpful neighbors may have been an attempt to say "I’m fine, don’t worry about me." It was as if she were trying to put on a brave face and play the role of a fighter.
Our culture reveres those who battle their illness and persist despite the odds. While palliative care is not synonymous with giving up, the goals are different than in other areas of medicine. My overall experience with palliative care and hospice was that these are places where it is ok for patients to feel vulnerable and uncertain. The staff treated patients and families with dignity and respect and, I think, tried to show patients that it is ok not to be strong all the time. Social support from family and friends can help patients to feel more comfortable processing their feelings of vulnerability and weakness. In the absence of this support, it may be somewhat more difficult but healthcare providers can assist with this as well. The trouble may be that this is a different patient-provider dynamic from what many patients have experienced in the past.
The patient I mentioned earlier was having her first meeting with palliative care on the day that I met her. What I witnessed was in some ways the dissonance between what patients initially expect based on their previous encounters with the healthcare system and the goals of alleviating suffering and promoting quality of life. This patient, used to the traditional health paradigm of fighting and showing no sign of giving up, was interacting perhaps for the first time with a health care provider who would allow her to be ok with feelings of vulnerability, fear, and uncertainty. I think many patients entering palliative care may have this feeling at some point. The difference is that without strong social support the patient may feel that they have to keep these feelings hidden from providers. Hopefully, as this patient meets with palliative care on subsequent occasions, she will continue to feel more comfortable sharing her feelings.
-Matthew H, UNC Medical Student