Identifying patients in need of hospice earlier in the course of their illness is a business and moral imperative for hospice providers. Though conversations about end of life are difficult for everyone involved, including clinicians and social workers who facilitate them, they reap substantial benefits for patients, families, payers, and providers.
Early conversations are positively associated with family decisions to limit or withdraw life-sustaining treatments, fewer in-hospital deaths, fewer unplanned hospital admissions, shorter hospital stays, family satisfaction with end-of-life care, and increased odds of receiving strong opioid pain medications in the last 24 hours of life, according to a study in the March issue of the Journal of the American Medical Directors Association.
“All qualitative research exploring patients’ and family caregivers’ perspectives highlights that it’s up to health care professionals to start these conversations,” Silvia Gonella, R.N., MSc, co-author of the study, told Hospice News. “Unfortunately, this often does not happen, for different reasons—lack of time, difficult topic that staff prefers to avoid.”
April 16 is designated National Healthcare Decisions Day, spearheaded by The Conversation Project, a public engagement initiative from the Institute of Healthcare Improvement (IHI), whose mission is to educate health care providers and the public on the importance of these conversations and how to conduct them. The annual observance is designed to encourage patients to express their wishes regarding their health care and for providers and families to respect those wishes.
While the initiative is not specifically intended to move patients into hospice care sooner, that is a common result. Encouraging patients to have these conversations helps them to learn about what hospice is and how they may be able to benefit from it.
“We call them health care decisions but it is really about values. The emphasis is not on ‘what’s the matter with you.’ The question is, ‘what matters to you?’” said Kate DeBartolo, director of the Conversation Project at IHI. “Often in these conversations you are talking about the hypothetical scenarios, the things that could happen to an individual. It’s much more important to talk about these values and what your loved ones need to know if they are going to speak for you.”
One methodology that is gaining ground is the conversation nurse model, developed over five years by Care New England Health System in Rhode Island. The program trains nurses to conduct discussions with patients about serious illness and their goals for care.
Within three years of the model’s implementation, the health system’s hospice program increased its daily census by 41 percent, with an 18 percent increase in hospice length of stay, according to a 2016 study in The Journal of Hospice and Palliative Care Nursing. Hospice and palliative care consults increased 15-fold, and 85 percent of referring physicians said that palliative care and hospice consults improved care.
The project began when a hospital palliative care physician found that she spent 75 percent of her time discussing care options rather than providing care. So she hired a hospice nurse to have some of those discussions.
“Once people saw ‘Hospice Nurse’ on her name tag, no one wanted to talk with her,” De Bartolo said. “After they changed the name tag to read ‘Conversation Nurse,’ they had to hire three more because everyone wanted to talk to the conversation nurse.”
Individual organizations and systems can implement their own programs and make a difference for their patients and their business, but some suggest that a regulatory approach may be needed to create a standardized industry-wide solution.
“I think Medicare would have some things to do that would be very productive on this,” Edo Banach, president of the National Hospice and Palliative Care Organization told Hospice News. “I think requiring an earlier conversation about wishes and goals and advance directives would make a difference, and the Welcome-to-Medicare physical and the annual physical are really good times to do it.”
While discussion of potential solutions is ongoing, hospice and palliative care providers and other stakeholders almost universally agree on the problem: These conversations do not happen often enough, and they do not happen early enough.
“Even before the hospice becomes involved, this is best done as early as possible,” Banach said. “This is best done before there is a crisis, before people reach the point in their trajectory where their illness is going to take their life.”