As an oncology nurse navigator, I find discussing advance health care directives to be one of the hardest conversations to begin, especially when things are going badly for a new patient and their family. This is sacred ground, and going in to discuss health care wishes with someone who is fearful and feeling ill can be daunting when there hasn’t been much time to build up a therapeutic relationship.
This happened last week when I got a call from Sue, an acute care nurse I work with. We share an 81-year-old patient I’ll call “Marilyn” because of her passion for all things Marilyn Monroe. Sue called me to come and talk to Marilyn about her advance health care directive.
Marilyn has advanced cancer and just begun receiving palliative radiation for pain in her left hip. She presented to the ER last week when her daughter brought her in with intractable pain. Tests done showed she has metastatic ovarian cancer. She was hospitalized for pain control, and taken to the oncology ward. Her 60-year-old daughter came with her.
I walked into Marilyn’s room with a comfort pillow in the shape of a heart (made by a ladies group and much loved by most of my patients) and introduced myself. We talked about my role as an oncology nurse navigator. Marilyn listened with half an ear; her main concern was her garden and who was going to look after it if she became too sick to do it herself. We discussed different options, and then she got on to her favorite topic: Marilyn Monroe.
Marilyn had just been asked by her doctor to complete a POLST (physician orders for life- sustaining treatment) and had questions about the differences between the health care directive she completed last year and the POLST form that we use in California, which is similar to the MOLST(medical orders for life-sustaining treatment) used in other states.
I’ve learned that a great opener to a conversation about a patient’s wishes for medical treatment when they’re too sick to tell someone what they would like, is to ask the patient what she/he understands about their disease, especially what the doctor has told them.
Marilyn told me that her doctor told her that she has very advanced cancer that cannot be cured. She was open and accepting. She told me, “I know I’m going to die of this disease.” Once we had established what Marilyn understood about her disease and that there was no cure for her cancer, I asked her what was important to her in this last part of her life. “Oh, my garden! I need to be able to sit out in my garden,” she said.
I asked her how she thought we could help her do that, and we discussed symptom management and what we could do to try and manage her pain.
Then we moved on to the difference between the POLST and the advance health care directive. I’ve found a great website — which can be accessed here — that goes over these differences. It explains that the POLST form is not intended to replace the health care directive; rather, it is there to complement it.
Advance health care directive is as follows:
- For anyone over 18 years old (I’ve found it very helpful to tell patients that everyone over the age of 18 years should have one, and that I also have one)
- Provides instruction for future treatment
- Can appoint a health care representative
- DOES NOT guide emergency personnel
- Guides inpatient treatment decisions when available
The POLST form is as follows:
- For persons with illness, at any age
- Provides medical order for current treatment
- Guides emergency personnel when made available
- Guides inpatient treatment decision when made available
Once Marilyn understood the differences between the two, she completed both forms and went home the next day.
I’m happy to report that as of our last conversation, Marilyn is doing well. She told me she’s relieved this part of her health care has been taken care of. She’s now concentrating on making the most of the time she has left in her garden.
About the Author
Jenny Marais, RN, BN, OCN, is an oncology nurse navigator for a West Coast health system and author of “Navigating Your Cancer Journey: A Handbook for Cancer Patients and Caregivers by an Oncology Nurse Navigator.” She obtained her associate of nursing degree in South Africa in 1988 at the age of 21. She has years of experience working with cancer patients. She has a bachelor’s of nursing degree through a distance learning program from the University of Dundee in Scotland, and is oncology nurse certified in the United States. She has applied her 27-plus years of nursing experience to the world of oncology nursing, where she shares her insight into the complexity of cancer care in the United States.