Hospice Care

From the sidelines, I watched my great grandparents age and go through the end of life stage.  Now I am on the front lines, trying to help my grandmother through this stage.  At first, I just helped her make decisions by doing the legwork and reporting what I'd found.  Then, I acted as the go-between when she had trouble communicating with doctors, nurses, or aides.  Now, I am making decisions about her medical care, finances, and other factors that affect her well-being, if you could call it that since she certainly is not doing well.  I am learning a lot, mostly by happenstance and through the kindness of strangers.  For example, every time there is a shift change in a nursing home, the philosophy of treatment also changes.  This makes it extremely difficult for a patient to receive a consistent level of care since each charge nurse, med aide, and doctor has his or her own beliefs about how, when, and why to give medication or how quickly and with what degree of patience to respond to patient requests.  There is also a wide degree of interpretation as to what constitutes final days and ethical medical treatment during such time.  Here are the the milestones I have noticed along this journey:
     1.  Declining ability to function and independently perform routine tasks;
     2.  Sudden decrease in function (or traumatic event such as a fall) such that independent living is no longer possible;
     3.  Rehabilitation stay (20-30 days) in a skilled nursing facility (may be precipitated by hospital stay) presenting many challenges in negotiating new interpersonal relationships;
     4.  Determination of need for long-term care based on outcome of rehabilitation stay;
     5.  Placement in nursing home and ensuing adjustments as patient and caregiver struggle to redefine roles, maintain sense of control over life choices and events, manage expectations, and navigate a second round of new relationships and personalities;
     6.  Slow and steady decline punctuated by sudden changes in condition and function  (may include more trips to the hospital to investigate pain, falls, or other complaints such as nausea that accompany declining function);
     7.  Hospice referral for debility that opens the door for medical management of pain and physical/psychological discomfort brought on by general weakness, physical and mental decline, and loss of control as patient loses ability or interest in self-feeding, entertainment, personal hygiene, toileting, and maintaining personal relationships;
     8.  Patient regresses to childlike dependence and displays personality traits such as impatience and intense ego-centrism, and begins to show signs of dementia and emotional distress;
     9.  Medicines are adjusted, increased, and supplemented through hospice care as physical/psychological condition changes occur.

Other important things I have learned are:
1.  If the patient has a 3-midnight hospital stay, Medicare will pay for 20 days of skilled nursing care.  Hospitals are often willing to help with this if patient's condition will warrant the stay, and if you ask them.
2.  Medication that is prescribed PRN means that the patient must request each dose of the medication.  This is not an effective way to keep a loved on comfortable if they are experiencing severe pain or discomfort and is not in a condition to keep up with their own medication regimen.  Another problem with this is that when a patient asks for medication in a general way, e.g. "pain medication," the nurse will refer to the med. chart for a specific medication and say something like, "It's only been 2 hours since you had [fill in name of specific med.] and you can't have it again for 4 hours."  The nurse will rarely say something like, "You've had this med. recently, but you could have this other med. now and maybe that will give you some relief until it's time to take the first med. again."
3.  Sometimes you have to take a break for a few days, and sometimes there is just nothing you can do to help them feel better.