Picture an adult daughter, employed full-time, taking a shift, sitting up with her Dad at 2:00 in the morning. Dad is picking at his nightshirt, he is irritated and uncomfortable. Daughter asks, "Are you in pain?"
Now, people in their seventies take great pride in not complaining. They were taught to be 'just fine'. Managing a family, most took great pride in having a job, being independent and self-sufficient.
A Hospice volunteer, recently having been blessed by being able to give palliative care to both of her parents, read the log book and recognized the signs of pain. Mistakenly, the Charge Nurse had not given the family a Pain Management Kit, despite a family request. These kits are asked for by Nurse, ordered by Physician, and are designed to deliver serious pain management in cases like this: in the middle of the night, when pain suddenly begins. Daughter cannot access a pharmacy in the wee hours of the morning.
In the meantime, THREE days later, Physician finally answers the fax from (regular) Nurse. Daughter had insisted that pain medications be provided above Tylenol. She saw the signs of pain in Mom. Pharmacist prepared some morphine tablets. They were to be given every 4 hours. Dad was having trouble eating, and was afraid (with delirium from medical issues) that Daughter was trying to poison him. Pharmacist gave an initial dosage of 5 mg., despite this being a rather low dose. He said he wanted to determine the correct dosage, a 'baseline dosage' before giving Dad a Morphine patch. In the meantime, the pain was not managed.
Many people were taking shifts caring for Dad. They all took turns, and read the log book, created to keep track of medications, the times Dad had been shifted (every two hours) to prevent bedsores, and to let new caregivers know when and who was going to be there.
This Dad, stalwart to the end, was incoherent at times. He was a dear, and liked to laugh. He did not recognize his bedroom of 30 years. At other times, he complained that his Son had not finished painting the room. Son lived upstairs. Sitting, propped up in a hospital bed, Dad no longer would make it to the bathroom.
Staff had provided a sanitary pad for the bed, but he often complained that he needed to visit the bathroom. A new Personal Support Worker, unfamiliar with Dad, began to get him up to take him to the bathroom. He collapsed on the floor. He was gathered up and put back into bed. Lesson learned.
Nurse, covering for the regular nurse -therefore new to Dad's case ( continuity of care is sadly lacking in many cases), demanded to know from Dad if he had pain. "Oh, no, dear. I'm just uncomfortable." He was given Tylenol. The Charge Nurse, offended that Volunteer was overstepping her bounds, complained about Volunteer to her Case Manager, who complained to the Hospice Director about Volunteer, that Volunteer knew not of whence she spoke.
Volunteer had done research, and could list the signs of pain in Dad. Despite being chastized, no one apologised for scolding her. She knew that she had given the right advice, and knew that helping the family advocate for pain management was the right thing to do. Families need to be assertive and advocate for loved ones. Record pain symptoms in a medical diary and do not stop until you are satisfied that the pain is being managed.