Healthcare providers aren't always comfortable having palliative care discussions with patients and their families. The reasons vary: It could be a lack of training or experience, or the emotional toll of giving bad news. Though often difficult, these types of discussions are essential to extending compassionate care as well as providing a positive patient experience.
To engage in these conversations correctly, providers must integrate their medical expertise with the patient or loved one's goals and values to create a customized, meaningful path forward.
Palliative Care Defined
The World Health Organization defines palliative care as "care that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual."
Practically speaking, palliative care consists of such things as providing relief from pain, integrating psychological and spiritual aspects of patient care, offering a support system to help patients live as actively as possible until death, and enhancing the quality of life. It is a life-affirming modality that regards dying as a normal process, but which intends to neither hasten or postpone death.
It is important to note that palliative care doesn't always equate to hospice care. It also includes long-term coordinated care of the chronically ill. The differences may be subtle, but they exist and comprise patient prognosis, goals of care, and insurance reimbursement.
For example, according to the American Association of Critical-Care Nurses, palliative care is appropriate during the course of a serious illness or injury while end-of-life hospice care generally refers to patient care before death. Also, palliative care is given in many settings, including ICU, progressive care, acute care, or outpatient. Hospice care is typically delivered to patients at home, in a skilled nursing facility, or the hospital.
How to Conduct Palliative Care Conversations
Now that you know what palliative care is, how do you carry out a conversation with patients and their families?
That's where education plays a critical role, says Rachel George, MD, MBA, Executive Vice President, Chief Medical Officer, SCP Health.
"Most physicians are uncomfortable having such discussions," Dr. George says. "But if a conversation isn't managed well, it can result in overwhelming stress, distrust of the medical system, and other undesirable outcomes that are not in keeping with the goals. That’s why we need to do a better job of educating providers on how to have these difficult conversations in such a way that keeps everyone on the same side."
Dr. George emphasizes the need for every physician to learn these conversational techniques, citing the fact that there are not enough palliative care specialists or teams available.
"Palliative care physicians are in high demand and low supply," she says. "There aren’t enough boarded palliative care physicians in the country, so other specialties must learn the basics and start getting comfortable with these conversations."
Symptom management is another aspect of palliative care that also requires education because patients need to know their clinical teams aren’t abandoning them or leaving them to decline alone.
"If you have a patient with a terminal illness or diagnosis, when you tell them they are not going to be treated anymore — or that's the message they get — they worry they are going to be in pain and left abandoned in their homes to the disease process, pain, and discomfort," she says. "We need to educate physicians to communicate to the patient that they will treat all of that, so they are comfortable."
Furthering that point, Dr. George explained the difference in mindset regarding palliative care versus how doctors treat patients in their day-to-day practices.
"The goal is to make the patient comfortable, not extend their life, so you give them whatever level of medication is necessary to control pain," she says.
Palliative Care Treatment Resources
Many resources are available to educate providers and help them get comfortable carrying out palliative or end-of-life conversations. These include:
The Conversation Project is a public engagement initiative with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected. It offers a variety of resources to assist physicians, including courses on how to have end-of-life conversations, advice on Medicare reimbursement, cultural and ethnic considerations, and conversation starter kits.
CAPC has a wealth of resources, including essential tools, training, technical assistance, and connection for all clinicians caring for people with a serious illness. The center also has a support site for those living with serious illness: Get Palliative Care.
The American College of Emergency Physicians addresses palliative care in the ED by detailing formal educational opportunities (including a hospice and palliative medicine fellowship) and listing other resources for emergency physicians.
Ariadne Labs, a joint health system innovation center of Brigham and Women’s Hospital and Harvard T.H. Chan School of Public Health, provides a broad range of resources on its website, including news, research, case studies, educational videos, and downloadable tools.
The American College of Physicians offers several tips intended to make palliative or end-of-life hospice conversations easier. They cover how to look for triggers that let you know when to have the conversation, how to conduct the meeting with the patient and family, and how to set meaningful and reasonable expectations.
SCP Health has tip sheets for hospital medicine and emergency medicine physicians designed to expand their knowledge and empower them with tools and resources to continue learning and improving their skill set.