Marian Grant, palliative care NP

I’m a health policy consultant for national palliative care organizations and often advocate for advance care planning, a process that helps people with serious illness prepare for future decision-making. I also work as a palliative care nurse practitioner (NP) in an academic medical center where I see the real-life aspects of advance care planning.

I recently saw a patient whose case typifies how advance care planning and policies to support it can work. A middle-aged woman with metastatic breast cancer at our cancer center had been seen the day before by the palliative care NP there. The NP was called to help assess the patient’s new-onset dizziness. While seeing the patient, she also spoke to her about her cancer status and suggested completing an advance directive. According to the NP’s note, the patient’s son, who was there with her, seemed surprised that things were not going as well for his mother as they had hoped.

The ‘Five Wishes’ advance directive.

Later in that same visit, the patient became profoundly hypotensive and was sent to the emergency department and then admitted to the medical ICU. The team there put in a request for a palliative care consult for metastatic cancer. I first saw the patient the next morning. She was exhausted after being up all night but was awake and oriented. I introduced myself and mentioned my NP counterpart in the cancer center.

She remembered their conversation and without prompting brought up the need to complete an advance directive. I carry copies of the Five Wishes advance directive form with me and handed one to her, thinking she would review it later.

Instead, she began right there and then to read and ask questions about it. Her admission seemed to have reinforced the need for confirming her medical preferences. I pulled up a chair and we spent the next half-hour going over the form while she filled it in, noting her preferences throughout.

A profound and clarifying process.

Through that process, we were able to discuss her health care agent (her son who lived locally, and then her out-of-state daughter), code status (she did not want to be resuscitated and was already DNR/I), her understanding of her prognosis (she knew her time was limited but had only recently had to stop working), and her goals of care (she wanted to live as long and as well as possible).

The process also brought out her thoughts about future cancer treatment (she knew it was no longer curative but was willing to endure some discomfort to gain additional time), palliative care (which she now saw as a way to help her have a better quality of life), her preferred location of death (in the state where her family lived and where she was from), and hospice (only when all other disease-modifying treatment was no longer an option or tolerable). She was very thorough in completing it all and we had a profound conversation.

When we were done, I asked her resident to witness the advance directive, something he’d never done before. I made a copy of it and gave it to the ICU social worker to scan for the patient’s electronic chart. I then wrote a note and texted the nurse practitioner in the cancer center to let her know the patient now had an advance directive, thanks to her earlier effort.

A best-case scenario.

In all my years of nursing, this was about as optimal an advance care planning encounter as possible.

  • There was a palliative care resource in the cancer center to help with both symptom management and introducing the idea of advance care planning. While no one anticipated that the patient would be admitted later that evening, their conversation was amazingly timely.
  • The ICU team requested a palliative care consult right away, and I was able to see the patient shortly afterwards.
  • When I did, she was eager to complete an advance directive. I had one with me and the time to help review it with her.
  • Because it was the ICU, there were people to witness the form, plus a social worker to make sure it was scanned into the EMR.
  • And through communication between the team, the social worker, and the NP at the cancer center, the patient’s wishes were now known and shared.

When I next worked, the patient was in the cancer unit. I helped manage her pain, and smiled when I saw her advance directive in the electronic medical record. Subsequently, her cancer treatment was deemed ineffective and she chose home hospice, which she received for weeks as opposed to just days. I can only hope that other patients get care that is this smooth and coordinated. That’s not always the case, but this gives me hope that it could become standard in the future with the right resources and priorities.

Marian Grant, DNP, ACNP-BC, ACHPN, FPCN, is the senior regulatory advisor for the Coalition to Transform Advanced Care and a consultant for the Center to Advance Palliative Care and the University of Washington’s MessageLab Serious Illness Messaging project. She is a nurse practitioner in the palliative care program at the University of Maryland Medical Center and adjunct faculty at the University of Maryland and Johns Hopkins Schools of Nursing.