Throwing a Rope Down The Hole of Despair: Early Referral to Palliative Care

Julianna Paradisi, RN, OCN, is an oncology nurse navigator and writes a monthly post for this blog. Illustration by the author: River, Mountain, Sky – detail of Polar Bear’s Last Song. Watercolor, inkjet collage, 2016.

Nervously, I adjust the Bluetooth earpiece I’m wearing before dialing the phone number. I’ve rehearsed my greeting. On the other end, the patient answers, “Hello?”

I tell her it’s her nurse navigator and I’ve called to find out how she’s doing. Her oncologist recently informed her the cancer has returned—further treatment will only ease symptoms, not cure the cancer.

“I haven’t left the house since I got the news,” she tells me. “Sometimes I just sit on the sofa all day. I don’t know what to do.”

It’s a common response from patients in similar circumstances. The realization they will not survive can become emotionally paralyzing, rendering a person unable to find purpose or a reason to keep going. Pain, fatigue from surgery, chemotherapy, and radiation therapy, contribute to feelings of hopelessness, hampering the ability to consider their choices.

“Did your doctor mention a palliative care referral?”

Many health care providers have difficulty discussing early palliative care intervention with patients, preferring to “wait until it’s necessary.” Too often, waiting results in a hospital admission and referral to hospice care a few days, or in some cases, hours before death.

Palliative care is like a rope thrown to a patient who has fallen into the hole of despair. It sends the message, “I can’t cure you, but I will not leave you abandoned.” However, successfully introducing a patient to palliative requires sensitivity. Without finesse, the patient is left thinking, “My doctor gave up on me.”

Palliative care is not end-of-life care.

One reason patients with incurable cancer do not receive early referrals is health care providers’ misconception that palliative care requires treatment be discontinued. This is not true. Palliative care is an additional layer of support during treatment, encompassing enhanced quality of life, psychosocial and spiritual support focused on the patient’s goals, social services access, advance directives planning, and pain management by nurse practitioners or physicians experienced in oncology.

As mentioned in a previous post, patients newly diagnosed with incurable disease need time to process the information. Addressing the topic of palliative care at the same appointment may not be appropriate. How much time is needed varies. Ideally, a palliative care referral is made the same time the treatment plan is initiated, but as stated above, many health care providers view continuing noncurative treatment and palliative care as either/or propositions, not tandem measures of patient support.

How can nurses help?

• First, introduce palliative care by stating what it is not: It is not end-of-life care (although it is a wonderful bridge to hospice when the time arrives). Palliative care is an extra layer of supportive care. Reinforce to the patient they can continue treatment with their oncologist while utilizing palliative care services.
• Next, focus the conversation on the patient’s goals. If they are unable to think of any, start with the goal of pain management, and then focus on nutrition and restoring them to an achievable baseline of health. When patients feel better, they stop sitting on the sofa all day, unable to leave their homes. They are better able to set goals such as attending the wedding of a grandchild, taking a trip to visit family living out of town, or recording a history of their lives for their children. Witnessing these transformations has reinforced my belief in early intervention of palliative care, making the conversation easier.
• Reach out to members of your institution’s palliative care team. Find out what services are offered. Cultivate relationships that allow you to pick up the phone or shoot them an email for ideas and advice about assisting patients with complex needs and circumstances. I find these informal conversations not only provide interventions for my patients, but also validate my feelings and frustrations, preventing burnout.

Not all patients will make use of palliative care services; nevertheless, every qualifying patient deserves the offer. When a patient I’ve referred to palliative care tells me his pain is manageable, and he took one more trip to hug his grandchildren before he dies, I’m glad I risked the conversation about palliative care on his behalf.