Courageous Conversations: How to Talk about What Matters Most in Palliative Care

Courageous conversations happen every day as the palliative medicine teams at Ochsner Health talk with patients and their families about life with a serious illness and help them plan for what matters most. “Palliative” comes from the word “palliate,” which means to relieve or lessen — essentially to make people feel better. The focus of a palliative care team is to provide support and improve the quality of life of patients dealing with serious illness.

The patient brings a wealth of experience that the palliative medicine team uses to help guide the patient in developing the plan for their care, regardless of the diagnosis. Many times, patients and families, as well as other members of the healthcare team, are frightened of a palliative care referral because they do not know what to expect or even the breadth of what we can do. We’ll walk you through an example of the care we might provide a patient to help you understand that we are a team that works to improve the patient’s quality of life so they can live their best life possible.

Who is a typical palliative care patient?

A typical patient for the palliative care team might be someone who has heart failure and has been in and out of the hospital many times for what they might call “tune-ups.” Each time, the patient called an ambulance and went to the emergency department for evaluation.

They might feel confident in the treatment plans but wonder if there is a better way to manage their care. Lengthy stays in the emergency department or the hospital might cause them to miss many important activities, such as their grandchildren’s activities, which are important to them. In this scenario, the patient’s cardiology team might bring up the idea of a palliative medicine referral to see if the palliative medicine team can help the patient live their best life without coming to the hospital.

Palliative medicine teams are commonly consulted either in the inpatient or outpatient setting to see patients during any serious illness to manage their pain and other symptoms. They are also effective in navigating the health care system.

Patients, such as those with heart failure, make up a portion of the patients referred to palliative care, along with patients with cancer, lung, kidney, liver or neurologic diseases. These types of patients can have a lot of ups and downs in the course of their illness that require coordination of their care.

The palliative team helps these patients maintain the best quality of life possible by working with others on the healthcare team to improve their function and mobility and manage their best lives with new equipment (such as oxygen) and other assistive devices and medications. Providing holistic care also means that team members address the patient’s social and spiritual concerns in collaboration with the patient’s own network of care partners.

What happens if a patient’s conditions continue to decline?

For our example of a patient with ongoing heart failure conditions, after they meet with the palliative care team, a next step might be having a nurse practitioner, who collaborates with their palliative medicine physician and social workers, go to their home as part of their palliative care plan. Medication doses might be adjusted and other medications added to manage their shortness of breath while physical and occupational therapy work with them (through the home health agency for a defined period) to improve their ability to get around.

Arrangements can be made to rent a lightweight transport chair with a portable oxygen tank to get them to important life events, such as their grandchildren’s activities. All these efforts by the whole team can help to make the patient’s life better.

If the patient’s disease progresses, the palliative team will work with the patient’s team of specialists to address any additional concerns. During this time, if patients know their disease is getting worse, conversations will continue to occur along their journey, and their care team will work on revising the care plan, which might include hospice. While palliative care focuses on easing pain and discomfort, reducing stress and helping people have the highest quality of life possible, hospice care focuses on quality of life when a cure is no longer possible, or the burdens of treatment outweigh the benefits.

Hospice might be recommended when getting out of their home to go to activities, such as grandchildren’s events, is no longer possible. Hospice teams are just as attentive to patient’s concerns as the palliative team.

This interprofessional team of caregivers allows patients to receive the best care possible in their home setting with their families, providing the role of care partners. The hospice team, under the direction of the patient’s hospice doctor, continues to provide aggressive symptom management, such as for shortness of breath or fluid overload, in the comfort of their own home.

Palliative care to hospice care

Hospice care is brought to the patient at any time of the day or night, preventing uncomfortable and unnecessary hospitalizations. Hospice can be provided in long-term care facilities, assisted living facilities and, in certain circumstances, in inpatient facilities. Studies have shown that patients have less anxiety and depression when their needs are addressed, and courageous conversations have been held.

Hospice is both a plan of care and an insurance benefit to allow patients the medical, physical, social and spiritual treatments they need as they near the end of their natural life without financial concerns. Patients continue to work with their hospice team to ensure they live the best life imaginable based on what matters most to them.

Having a courageous conversation to discuss what matters most is truly a gift the patient can give to their family!