Whether or not to choose palliative care for a patient and loved one nearing death is no new discussion, especially in the hospital setting. I have learned a few things about this subject throughout my ten-year nursing career.
One of the most important things I have learned is that considering palliative care options is a very personal, demanding and highly sensitive decision-making process for families.
Sometimes as healthcare workers we become impatient with families who cannot seem to come to a decision about which path to take when the patient is nearing the end of life. What seems clear to nurses and physicians may not be as readily accepted or understood by the family decision makers. It is during this “deliberating process” that the healthcare team needs to offer support, resources and patience to the family.
Coming to terms with end of life decisions are not easy. The family may have already been through a long course of illness with their loved one. They are tired, and feel that it is still their responsibility to do everything within their power to keep their family member alive.
I give credit to families that I have seen over the years who have been able to peacefully and courageously come to the understanding that medical interventions are limited, and know that their family member’s last days should have them feeling comfortable, and at peace – to die a dignified death.
I have watched patients who were nonverbal, with limited ability to communicate, show to their families that they do not want to remain alive anymore. They were restless, trying to remove their lines, tubing and boxes. Once the decision was made to allow them to be comfortable and to remove medical interventions they rested and appeared satisfied. The restlessness stopped. Families and healthcare workers must pay attention to these behaviors from the patients.
It is so important to allow our patients, with the support of their families, the dignity that they deserve at the end of their lives.
There is a world of support available for families and patients once a decision has been made to end treatment and provide a peaceful transition.
Most hospitals have “quilt makers” that voluntarily provide hand made quits to cover the dying patient. If the patient does not have visitors there are other volunteers through spiritual support services called doulas who offer their presence through sitting or reading. A specially trained music thanatology harpist who plays at the bedside offers comfort and support. These, along with highly skilled nurses and physicians, provide a unique approach to end of life care.
Don’t think for a minute that just because a patient is nonverbal, and primarily unresponsive, that they are not aware of what is happening at the bedside. One woman, after not having any visitors for several days received flowers from her friends. A harpist played briefly in her room and then, satisfied, she let go and drifted off peacefully.
Another patient waited for his son to come. After the son sat with his dad for a period of time, the man was able to die at peace in the comfort of family. The son was able to say good bye and to express his love one last time.
Some patients wait until all family members leave the room, so as not to cause them too much grief. When the family steps out, the patient dies, comfortably and peacefully.
There is much to be said about dignity at the end of life. The support is there for family members in that process.
There is sanctity in life and sanctity in death as well.