With a yearlong waiting list to enter a skilled-nursing facility for long-term care, my father was placed on palliative care at home recently. While it may not seem so, it was an early Christmas gift for our family.
The occupational therapist who had been helping teach my mother and sister how to safely transfer my father asked my father’s physician about a palliative-care consult, and the physician put in the order.
My father has advanced Parkinson’s, but he is not near the end of his life. He doesn’t have pain, but his breathing is labored, he has significant fatigue, he is depressed (who wouldn’t be?) and he has bowel and bladder issues. For all intents and purposes, he is home bound.
The local home health agency that was providing occupational therapy also has a palliative care and hospice division. So the same agency sent a new person to the home to evaluate my father.
Palliative care is defined as “coordinated interdisciplinary care for people with a serious illness with a special emphasis on pain and symptom management, and focusing on patient choice and goals of care.”
It is a rapidly growing field but, having been officially recognized as a specialty in 2006, a relatively new one.
The easiest way to explain the difference between hospice and palliative care is that all hospice is palliative care, but not all palliative care is hospice.
Hospice is for patients with a limited prognosis (six months or less), and it focuses on care in the final stages of disease. Many of those in hospice had earlier chosen to stop their current treatment and enroll with hospice.
Palliative care can be accessed at any time, regardless of prognosis and treatments being received. It may be ordered if the patient is experiencing pain, stress or other symptoms of a serious illness.
Palliative care may be accessed at the hospital, at a residential-care facility, at home or in an outpatient clinic. Home-based services are specifically for those who have trouble getting to the physician.
I was present on the phone while the palliative care nurse who came to evaluate my father asked him and my mother a series of questions, took my father’s vital signs and looked at his records from the recent in-home care visits.
Her evaluation led to the recommendation of palliative care. She explained that she would be coming once a week and that my father was eligible for a home health aide for a few hours twice a week, to help with his personal care.
This support is a tremendous benefit for my mother and sister, who often have questions about a particular symptom of my father’s illness and who are all but worn out taking care of my father 24/7 by themselves.
The palliative care team includes physicians, although my mother has been encouraged to continue to call upon my father’s regular doctor if she has concerns. The nurse explained that the palliative care team works in partnership with my father’s primary care doctor.
The palliative care team also includes social workers, chaplains and advanced-practice providers. The team will become important as my father’s condition worsens and we are tasked with some difficult medical choices and the coordination of care.
My mother was relieved to hear that their Medicare insurance would cover the costs of this current level of service of palliative care.
While I did get my mom a video baby monitor with night vision so that she could keep an eye on my dad while they are in separate rooms, there is little in the way of worldly goods we could have purchased for my parents this holiday season.
The gift of some extra help and peace of mind was exactly what the doctor ordered.
