When some people envision palliative care, they see someone dying or having a dreadful chronic disease who is slowly dying. In actuality, we all die from something. In the past 4 years, I have learned what palliative care means to me.
When taking care of the patient and family, the goal is to increase quality of life: we work very hard to give patients enough resources to enjoy their life with whatever turmoil they are experiencing. Whether you have cancer, amyotrophic lateral sclerosis, heart failure, Parkinson’s dementia, or are just naturally aging, palliative care is used in each of these situations.
I don’t normally write about my own life and experiences, but I feel my story can help others understand palliative care and its intent. I work about 40 to 50 hours a week in a growing and thriving outpatient Palliative Care Program.
We have our own palliative care physicians who lead the clinic 3 days a week and 2 nurse navigators. Our outpatient team sees only patients with cancer. Me and another nurse are the “continuity” in the clinic. So for 40 to 50 hours a week, we help patients survive their active cancer—live and enjoy their lives.
To do this the right way, we must give our heart and soul to each patient and family member, and exhaust our empathy. Sometimes, when it is time to go home, we are tired and drained, but we must still “deal” with our own life and whatever is going on in it, which is not always easy.
An Oncology Nurse and a Caregiver
I am 44, and my parents are 80 and 78. My mother has chronic obstructive pulmonary disease, congestive heart failure, and a concerning PET scan. My father has the beginnings of dementia and is failing physically. My mom has 7 children; she kept us all in line and loves all her grandchildren.
My mother is oxygen dependent, but she doesn’t wear it; she is in and out of the hospital with a variety of complications related to her chronic illnesses. She does not drive anymore, and getting out of the house is exhausting and frightening to her (though she may not admit it).
She had a recent CT scan with a suspicious nodule that is growing. She refused the PET scan, stating she will not do anything about it anyway. You can only imagine how that was accepted by her daughter (me)—an oncology nurse.
My father is comparable to Jack LaLanne, the fitness guru. He is a true athlete at 80, walks, swims, bikes, volunteers at school, very active in his church, and helps carpool my youngest child. But his mind and body have a different plan for him. Exercising is getting harder and harder, because of spinal stenosis, ruptured discs, and now dementia. He is afraid that if he stops exercising, his dementia will get worse—I am afraid he may be right.
I realized I was “palliating” my parents as I do my patient population. I was trying to be their palliative care nurse and daughter at the same time—those 2 are like oil and water. I was mad at my mother for not getting the PET scan, and mad at my father for not listening to me about decreasing his workout load, and wanting him to see a specialist for his dementia, and he refused.
What My Patients Have Taught Me
I thought to myself, “Would you be mad at your patients if this was their response to their demise?” At that point I realized I could not be their palliative care nurse and their daughter simultaneously. I just have to be their daughter, with some “educated love” on what they are going through. If they were my patients, I would support their decisions and offer safety nets to support their unforeseeable future. I would get some home health in the house for my mother, suggest they ask for my help to grocery shop and do things around the house; but most important, just be present in their lives and try to be a daughter, not a nurse.
So this is what I did: my mom got some home health in the house after a recent fall and a torn hamstring. My dad will be receiving more spinal injections, and I am taking time off from work to take him, since my mother cannot drive anymore.
I write down any changes I make to his schedule: he calls multiple times the week and days before to make sure this is the plan.
My mom was once able to go grocery shopping on her own, not too long ago. It is much too hard for her; my parents go together every Wednesday. I have suggested they take the walker with the seat. They do, my dad pushes the walker, and my mom uses the grocery cart. Still giving them some independence is a great safety net and a boost to their quality of life.
After I realized that I might be able to combine my knowledge of palliative care and the love of my parents, the stress of dealing with “home life” after a sad day in the clinic got much easier. It is much easier to deal with the fact that my mom will probably never get a PET scan, and most likely my dad will never see a specialist for his dementia.
My patients have taught me that what they chose may not be what I would want, but it is my job as a nurse and a daughter to help them all stay as safe, healthy, and happy with their decisions. That is what palliative care means to me.