Many families are ill-equipped to handle the various physical, emotional, psychosocial and practical needs of a loved one nearing the end of life. Forging stronger collaborations with advance care planning service providers can help hospices ensure better goal-concordant care delivery.

Decisions at the end of life reach beyond an individual’s medical condition and involve in-depth consideration of how each person defines quality, according to Sharon Hamill, executive director at the California State University Shiley Institute for Palliative Care.

Advance directives provide a basic foundation of guidance for a family and health care team to honor a patient’s wishes, but often gaps can appear when unforeseen circumstances arise, Hamill stated.

“The devil is in the details. There are big decisions that need to be made, but it’s the millions of little decisions where families have the most difficulty and the most misunderstanding if a person lacks capacity,” Hamill told Hospice News. “What’s thrown at you may not have been anticipated [and] there is a real disconnect for families and patients. Those little decisions where family members seek certainty in an advance directive are not an exact science. We need to recognize that it’s a basic road map or a guidepost.”

Complex end-of-life goals

Being transparent about the trajectory of a terminal illness is important when engaging in advance care planning discussions, Hamill said. Understanding the physical trajectory can help families prepare for a time when their loved one may become unable to voice their pain and symptoms, she said.

Much of the advance care planning processes center around a patient’s capacity to make their own decisions. A significant component for health care providers is determining the level of a patient’s mental capacity versus their competence in medical decision-making, which can change dramatically depending on their condition, according to Hamill.

Advance care planning can help provide “wraparound” support well before a patient is nearing the end of life, said Dr. Karl Steinberg, medical director at Hospice by the Sea. He is also president and CEO of California-based Stone Mountain Medical Associates Inc.

Having ongoing conversations about patient preferences and goals can help reduce feelings of conflict, doubt and guilt during difficult decision-making times, Steinberg said. Goals-of-care conversations can help set realistic expectations for patients and their families about the types of resources that are available through insurance and federal and state reimbursement, as well as aspects of care that they may need to supplement on their own. Armed with this information, patients have a window into what would constitute as a safe, appropriate care setting alongside the probable trajectory of their illness, he stated.

Though health care providers across the continuum recognize the importance of advance care planning, time constraints and societal views around death serve as the two large barriers preventing wider access and utilization of these services, according to Steinberg.

“On the clinician side, time is the most usually invoked excuse for not prioritizing ACP,” Steinberg told Hospice News in an email. “Some clinicians shy away from the topic because they don’t want to be seen as taking away hope or being too negative. On the patient side, mistrust of the health care system, often not entirely unjustified, can derail these discussions. Guilt can be a factor, where a family member doesn’t want to feel that they are making a decision that is going to shorten their loved one’s life. To combat these barriers, I think we need to continue to shed light on the importance of these conversations — both in the public and professional world.”

Collaborative decision-making

Even with advance directives in place, the end of life can often be a time of crisis for families, said Judith Wood Mintz, director of social work at Unity Hospice and Palliative Care. Founded in 1992, the family-owned, Illinois-headquartered hospice and palliative care organization provides care in its home state and in Indiana, Missouri, Texas and Wisconsin.

End-of-life decision-making processes can be complicated by several factors such as rapid changes in a patient’s medical condition alongside complex feelings of anxiety, concern, grief and sadness, Wood Mintz stated.

Planning for a variety of potential circumstances is key to ensuring positive experiences and meeting the immediate and evolving needs of patients and their families, she added. Greater patient and referral education efforts are needed to move the needle toward improved outcomes.

“Hospices are uniquely positioned to educate patients and families about the advantages of planning ahead,” Wood Mintz told Hospice News in an email. “The opportunity exists to address these needs before a crisis occurs. Hospices can also educate hospitals, clinics and skilled nursing facilities about the advantages of advanced care planning and the resources available. Advanced care planning empowers patients to consider their wishes and needs even sooner.”

Strong partnerships play a significant role in delivering goal-concordant care, according to Wood Mintz.

Collaborations with advance care planning service providers can offer families an additional layer of support when facing multifaceted decisions about their loved ones’ end-of-life care, according to Farah Baxter, co-founder of Soalma. Open communication is a large part of successful collaborations that bear fruit around quality improvement, she indicated. 

Soalma is an advance care planning and legacy building digital platform. The platform partners with insurance providers, funeral homes, estate law, senior living providers and other related sectors. Soalma offers practical and emotional legacy guidance, tips for important documentation, educational videos, access to expert advice, memory sharing, and other helpful resources for end-of-life planning.

Time constraints, emotional pressure and a focus on medical care can make goals-of-care conversations difficult, Baxter stated. But shifting to a more collaborative, less clinical approach can make a “big difference,” she said.

Hospices and advance care planning providers can collaborate to change the narrative by educating patients about the supportive services and resources available to them, Baxter said.

Goals of care conversations are often more medically-focused, with less emphasis on the practical, emotional, spiritual and psychosocial components of the end of life. More collaborative partnerships across various business and health care sectors can aid in addressing patients’ diverse needs and goals, she indicated.

“To make real progress, we need to expand the idea of planning beyond just medical advance directives to comprehensive end-of-life planning that anyone can do at any stage of life,” Baxter told Hospice News in an email. “This requires collaboration across industries like hospice, life insurance, estate law and senior living working together with planning tools. Shifting cultural norms is key — end-of-life planning should be a natural part of life. Comprehensive advance care planning — beyond just medical or legal aspects — gives patients a sense of control, helping them live fully with the time they have.”