In April, I received an e-mail from a friend living in another state who was informing me he was now receiving hospice care for his wife. They are long-term friends of mine in their mid 80’s. Both had led active lives until two years ago when she sustained a fall and fractured hip. Hospitalized for several weeks followed by rehab, she subsequently developed memory issues; later diagnosed as Alzheimers. He has been her primary caregiver with assistance via home care aide.
In his email he states, “I kick myself for waiting too long to explore hospice care.” In the three weeks since hospice began coming to our home she has perked up and is now more interested in her surroundings and in the nurses coming to care for her.” “I am receiving emotional support from the Social Worker and the Chaplain. …I’m in better spirits than I’ve been in years and am sleeping better.” “I resisted the idea of hospice because it felt like I was giving up on her .....I am coming to terms with acceptance of things as they are and I am more peaceful.”
Unfortunately, one of the myths about Hospice Care is that it’s the place where someone goes to die. By having a conversation with one’s physician after a life-limiting diagnosis, anxiety and fear associated with end of life may be diminished. Once it is determined that Hospice care may be an option, the physician or the family may contact Hospice and request an evaluation. The evaluation conducted by an admission nurse and physician will determine whether the patient meets the medical criteria for Hospice care.
The comprehensive services which hospice provides are offered where ever the patient is living. These services include medications, medical equipment and supplies. The cost for services is usually covered by medicare or the patients insurance. The focus is on symptom and pain management with the primary goal being comfort care. The professional team is comprised of a medical director, nurses, social workers, chaplains, bereavement counselors, home care aides, physical therapists, nutrition counselors and volunteers.
At Accord Hospice, the interdisciplinary team has expertise in working with individuals of diverse ethnic and racial groups with varied religious beliefs. Support groups are offered to the families and extend to the community. These groups focus on emotional support in dealing with issues associated with caregiving and grief.
Educating families and the community on end-of-life care is paramount. The standard which is upheld is respect for the dignity of people as we deal with the myriad issues associated with dying. I received an update from my friend over the week-end who stated his wife’s condition remained relatively stable. “We’re living day by day and moment by moment, yesterday, I picked her up in my arms and danced around the room, she is more frail, but still smiles when she hears music …don’t know how much more time God will give us, but we’ll take every moment.” When we finished our conversation I was reminded of the comments made by the late Dr. Oliver Sacks, (1933-1915) “I am now face-to-face with dying, but I’m not finished with living.”
Francesca Moulinier is a Retired Registered Nurse with a Masters Degree in Social Work and Director of Community Support Services for Accord Hospice of the White Mountains.