Advance Care Planning Education an Avenue to Hospice Access

Efforts have been growing to push forward education and awareness about the importance of advance care planning. In addition to expanding public knowledge, more training and education is needed among health care professionals of all walks to facilitate and encourage conversations involving goals of care at the end of life.

Advance care planning is an important avenue for patients to formally document their wishes and goals for end-of-life care. These plans often include a designated surrogate who can make health care decisions should the patient become incapacited. The information can be crucial to a patient’s experiences during life’s final stages.

Despite the benefits of advance care planning, many patients don’t pursue it or pursue it too late. Only 14% of patients with serious illnesses had advance care plans in 2017, according to research from the American Geriatrics Society.

A siloed health care system can make it difficult for advance care plans to be communicated, maintained and updated across the care continuum. Hospice providers will need to boost knowledge among their staff of the potential pitfalls in obtaining and ensuring accuracy when it comes to seeking avenues to improvement, according to Jennifer Moore Ballentine, executive director of The California State University Shiley Institute for Palliative Care.

“Our health care system is neither healthy, caring, nor a system. It’s very fragmented, and it’s tough to make sure that these documents land in the right place at the right time,” Ballentine told Hospice News during a recent episode of the Palliative Care Executive Webinar Series. “It’s important to go through that process and go through that conversation. There’s so much that can go wrong in the process, and so much that has to go right in the process, for your physicians to know that you have an advance care plan and that you’ve made these decisions, and then for them to follow it.”

The Shiley Institute aims to expand access to and awareness of palliative care by educating current and future health care professionals, addressing a critical shortage of nurses, physicians, social workers and spiritual care providers in this field.

A large part of what can go wrong in advance care planning is that it often relies on the patient’s self-advocacy and awareness, rather than physicians leading the charge on these conversations, according to Ballentine.

Hospices can be a bridge to expanding access and awareness to advance care planning among patients earlier in their health trajectories, Ballentine told Hospice News.

“Advance care planning has been a great entry point for hospices to get out into the community and talk about something that’s a little less scary than hospice,” Ballentine said. “We can and should have this conversation when [someone is] healthy and explain how they eventually might need hospice. Hospices have a real opportunity and a responsibility to continue to talk about it.”

Reluctance to pursue advance care planning options stems from public misperceptions of that process, as well as a lack of understanding of the nature of hospice and palliative care, according to a 2020 study in the Journal of Palliative Medicine. The lack of understanding and awareness breathes into the health care system at large as well.

Movement at a federal level may be promoting education and training in advance care planning nationwide. Introduced at the close of 2020, the Compassionate Care Act would significantly expand federal resources to support advance care planning and end-of-life care decision making.

The bill would also establish a nationwide public education campaign to educate the people in the United States about the importance of advance care planning, including grants and pilot initiatives to educate students in medical, nursing, social work and other related fields about end-of-life discussions and care.

If enacted, the legislation would foster development of core end-of-life care quality measures across each relevant provider setting and also establish continuing education for health care providers.

Integrating support across the health care system will be a key to improving access to patients’ advance care planning records, according to Ballentine. Advancing education and training in advance care planning will be a necessary changes.

“In order for [advance care plans] to work, they have to be in the hands of the people who need to refer to them at the moment that they need to refer to [patients],” said Ballentine. “Some integrated health systems are doing a very good job of this, where they really do weave it into their patient care and people are encouraged to complete advanced directives. They set aside time for people to talk about it, and it then gets put into a medical record that everyone has access to and is expected to check.”