Last December, I sat next to the bed of a man who was in his final hours of his struggle against lung cancer.
His wife sat vigil, caressing his hand and kissing his forehead telling him how much he was loved. Brave family and friends stopped by to offer words of support and say their goodbyes. All the while, the hospice staff provided education about comfort care at the end of life during their daily visits. They answered the family’s questions about non-pharmaceutical techniques to relieve discomfort such as use of positioning, cool cloths, oxygen, gentle massage, music and aromatherapy.
The home health aide taught family how to position the hospital bed to help with breathing. Medication was eventually administered per the man’s wishes. He shared this request during the initial days of hospice when his goals for care were discussed, not only with the nurse and his family, but also the social worker and chaplain.
I have been a hospice social worker for the past five years. Why? Some have asked incredulously. I’ve always credited my mother for instilling in me from a very young age the need to honor and value my elders. She worked as a nurse’s aide in a skilled facility for most of my life.
I’ve also been what some would consider a bit of a “Pollyanna” when it comes to my belief that everyone can have quality of life, given whatever their circumstances may be. And it’s the living examples of patients and their families that I have had the honor of walking alongside in their final years that have convinced me that not only is quality of life possible up until death, but should be everyone’s carefully considered prerogative.
Because of Medicare’s criteria for “expected” death to occur within six months for hospice eligibility, the misconception still exists that hospice is only for the final days or weeks of life.
The reality is, once an individual has made the decision to stop seeking to cure the illness that is likely to end their life (such as COPD, heart disease, end stage dementia) and let the disease take its natural course is the best time to begin the hospice conversation with a physician.
Some patients and their families are fortunate enough to benefit from hospice services for up to a year or more. The quality of life of the patient and family becomes about making the most of each day going forward rather than the pursuit of more tests, trial drugs, new therapies and re-occurring clinic visits that can make living exhausting.
The hospice team brings care to the patient and family in their chosen living environment instead of pursuing hospitalization. The patient and their caregiver decide together what is most important to each of them going forward, and hospice provides the medical, psycho-social, emotional and spiritual support to help achieve those goals.
Rather than avoiding conversations about the end-of-life, what if we embraced it as a natural stage of life that each one of us will eventually encounter? What if we planned for our last years just as we do for a new birth in the family? What if we took the time to consider what might be most important to each of us in our final months and then offered that up as a gift to our loved ones who would otherwise be left to debate what is best for us?
The hospice nurse knocked on the bathroom door where I had stolen away to try to compose myself. “He’s still here, you should come back.” I returned to the bedside and took the man’s hand. He gazed into my eyes until the life faded out of his. It was hard to believe it had been only yesterday when he had murmured, “You are the best daughter a man could ever have.” I don’t know about that, but I do know that the support of hospice certainly made it easier to focus on trying to be a good daughter during this sacred time in my life.