A family member—likely the patient’s daughter—sat down at the hospice dining table with a cup of coffee. She looked visibly stressed as a nurse joined her to review the care plan, payment, and other formalities. Once that was finished, the woman asked if they could ensure her father kept eating and “get healthy again so he can go back home.” The nurse tried to explain that what she was asking for simply wasn’t the purpose of hospice care, and that they couldn’t force the patient to eat meals if he didn’t want to. They went back and forth for a while before the nurse just said she had to leave to check on the other patients.

This isn’t the first time I’ve seen family members request something similar, such as ensuring the patient continues to receive food to stay healthy, etc. I always see the nurses and aides struggling to make the family members understand that they simply can’t do that. My initial thought was that maybe some families hadn’t fully understood hospice. But when I thought about it more, I think that it might be that some have a harder time accepting the fact that their loved ones are nearing the end of their lives. However, this gap in understanding sometimes led to tension between the nurse/aide and family members. 

From the perspective of the family members, hospice care is costly, especially when staying in-house. They want to ensure that their family members are well taken care of, which is why many will ask for personalized attention and care for their loved ones. It could also be a cultural background that impacts family members and their requests as well.  For example, many cultures emphasize food as an essential part of life. As people near the end of their lives, they often start eating less, sleeping more, and exhibit other indicators. It would be great if there were a greater understanding of this among people as a society. 

From the perspective of the nurse and aide who work at the hospice (specifically at the one where I volunteer), they care for up to ten other patients simultaneously, alone. It can be a challenge when someone misinterprets your job and you find yourself explaining it multiple times. This can sometimes detract from the time and attention they devote to other patients. Anything could happen at any time, and patients need to be constantly monitored, which is done through patient monitors and the call buttons in the rooms. The nurses and aides also work 12-hour shifts at this hospice, and, understandably, they get tired.  

All of this being said, some family members have adopted the philosophy of hospice care. For example, another woman was visiting her mother in hospice. After she came out of her room, she admired the hospice, enjoyed the weather, and looked very relaxed. When I spoke with her, she mentioned that she knew it was time for her mom to go. Her mom had been battling cancer for a long time, and the woman was at peace that her mom was no longer in pain. So with that, can we say that it depends on the person? Each person has a different situation and will react differently, and that is something the  hospice staff in general should be aware of and be accommodating.

I believe that this gap can be closed, whether through better education about hospice care and its purpose or more transparent communication between hospice staff and family members. Mutual understanding is crucial so that the patient and family members can have the best and smoothest hospice experience. 

Before patients enter hospice care, their families are typically given documents such as legal and medical directives, Power of Attorney documents, Do Not Resuscitate orders, and other relevant documents. While being bogged down by all these legal documents, the philosophy of hospice care could be lost on some. For example, a study published by the NIH focused on the knowledge of family caregivers about people with dementia. Approximately 35% of patients in hospice care have dementia. The study highlighted one of the key areas where family caregivers lack understanding: the goals and guidelines of hospice care (from the perspective of the hospice professionals interviewed).

Overall, I think there are a couple of things that could be done to help give family members a better understanding of hospice care (if these are not already being done at locations). There could be pre-admission education sessions about signs that someone is reaching the end of their life, and specifically what type of care family members should expect their loved ones to receive. In addition, providing some visual way for families to learn, such as through brochures or videos upon admission, would also be a great resource. Hospice care is not just about providing better medical support for patients, but also offering a more compassionate and structured emotional support for their loved ones.