Courageous Conversations: Fostering Meaningful Dialogue About Quality End-of-Life Care

The single tear rolling down her cheek broke me.

It was my mom's third visit to the emergency room in a few weeks, ending with her being admitted into the hospital in the middle of the night. The admission process was long and arduous, with two nurses trying many tactics to insert an IV line. My mom, eyes closed, didn't say a word as they struggled to find a vein. Only a single tear rolled down her cheek. She was exhausted, scared, sad — and ready for a provider to start the difficult, but necessary, conversation about her options for end-of-life care.

Diagnosed with lung cancer in 2000, my mom was treated surgically. She resisted chemotherapy because my father had chemotherapy and radiation to treat his bout with lung cancer and died six months later with terrible quality of life. The experience haunted her. When her cancer returned in 2018, it was surgically removed a second time but returned again more aggressively eight months later. Her oncology team strongly encouraged a treatment of radiation and immunotherapy. My siblings and I advocated that she stop treatment and enjoy whatever time she had left.

I asked the lead oncologist about palliative care. I will never forget my disappointment and anger when instead of providing information, she looked at my mom and said in a tone implying that she would rather not discuss, "Catherine, do you want to know about palliative care?" My mom ended up listening to her oncology team with the mindset "doctors know best." She endured months of aggressive treatment leading to multiple visits to the ER and admissions coupled with ongoing suffering.

Could my mom's final months have been different if the provider team had suggested palliative or end-of-life (EOL) care instead?

November is National Hospice and Palliative Care Month and helps to raise awareness about high-quality care for people living with serious and life-limiting illnesses. Palliative care is patient-centered care with support for the family that optimizes quality of life by alleviating suffering across the continuum of a patient's illness. EOL care is comprehensive care for a life-limiting illness that meets the patient's medical, physical, psychological, spiritual and social needs. While hospice care emphasizes symptom management without life-prolonging treatment, palliative care, including EOL care, can increase patient and family satisfaction, reduce hospital length-of-stay, decrease readmission rates and lower costs.

Vizient Performance Improvement Programs have addressed managing serious illness with palliative and hospice care in past performance improvement projects. Through our work with providers, we have identified the following key takeaways for healthcare organizations to support the management of a person's serious illness:

• Enlist key palliative care champions: Make palliative care a broad-based system initiative and enlist palliative care champions. They should be someone who has a passion for palliative care, can help drive success and promote enthusiasm. It does not necessarily need to be a physician but could be an advanced practice provider and there may be more than one champion.
• Advance palliative care upstream: Identify patients who need goals of care discussions or those who could benefit from palliative care. Begin these conversations early by implementing a practice approach for primary care providers and staff to discuss goals of care with patients diagnosed with a serious illness.
• Educate providers: Develop skills for staff about how to have conversations with patients about goals of care. Confirm a shared understanding of the medical condition with questions and statements such as:
• "What do you understand about what's going on with your illness?"
• "When you think about the future with this illness, are there any things you worry about?"
• "From what I understand, you have a combination of goals. You would like to try to keep the disease under control, but also not spend a lot of time in the hospital, right?"
• "Let's look at a treatment plan that allows you to work toward your goals. I recommend …"
• Provide early palliative care consults: Develop a process to engage palliative care or hospice within 24 hours of EOL patients or patients with a serious illness arriving to the emergency department or hospital.
• Appoint a surrogate: Utilize an advanced care planning navigator to increase awareness, accessibility and completion rates of advanced care planning for all goals of care discussions.

While my mom didn't receive palliative care, she spent the last month of her life in hospice. As a result, her pain was managed and she was relieved of tests, needles and machines. Just quiet. The hospice nurses showed her kindness, love and respect and their support enabled her to maintain dignity during a peaceful transition at the end of her life — an experience that moved me to tears of gratitude, comfort and love.

Learn more about Vizient's Performance Improvement Programs.