How Advance Care Planning Affects Caregivers, Health Care Costs

Greater access to advance care planning services can lead to improved caregiver satisfaction and reduced health care costs at the end of life.

Alongside goal-concordant care and quality outcomes, families with access to advance care planning services often experience less distress in the final stages of a loved one’s life and spend less time and money on expensive emergency care, said Dr. Simeon Kwan, West Region Medical Officer at Carelon Health Palliative Care, part of Elevance Health.

“There are countless poor experiences for those that don’t discuss these end-of-life wishes ahead of time,” Kwan told Hospice News. “When we discuss these difficult decisions, then our caregivers can feel more empowered to make the right decisions their loved ones would have wanted in a less stressful manner in what can feel like a time of chaos. Quality-outcome wise, advance care planning can help improve unnecessary emergency room use and hospitalizations, readmissions and cost utilization at the end of life. It also helps increase the median length of stays on hospice.”


Barriers to access

A growing number of families will face end-of-life decisions as aging populations swell nationwide. Roughly 82 million people in the United States will be 65 or older by 2050, a 47% rise from 58 million in 2022, according to projections from the U.S. Census Bureau.

However, a large proportion of families nationwide have not held advance care planning discussions. Only 10.9% of 955, 777 Medicare decedents who died between 2017 and 2018 utilized these services, a JAMA Health Forum study found.

The challenges in lagging advance care planning access could leave many patients and their caregivers with a range of unmet emotional, physical and psychosocial needs, according to Dr. Delia Chiaramonte, integrative palliative physician and founder and CEO of The Integrative Palliative Institute.


“That’s a horrific situation for family members and causes them extraordinary emotional suffering to have to make a decision without that guidance or idea of what their loved one would want,” Chiaramonte told Hospice News. “Making these decisions in concert with the person takes away so much of that burden and angst. It helps a person die with dignity, maintain control [and] can significantly reduce people’s physical, emotional and spiritual suffering.”

Patients with serious and terminal illnesses can incur a range of pain and symptoms as they approach the end of life, Chiaramonte. Some may be manageable in the home with the help of a hospice or palliative professional, while others may need more intensive levels of care, she stated.

Understanding whether a patient wishes to have more aggressive versus less intensive care as their illness progresses is a core piece of health care quality, Chiaramonte stated.

“If someone can no longer speak for themselves and doesn’t have some kind of explanation of what they would want, we have no idea how much they may be suffering,” Chiaramonte said. “It’s an unacceptable circumstance to be at the mercy of whatever doctor is taking care of you. If we have a document that can tell us what someone would want, it’s crucially important for the patient and the family.”

Impact on caregivers

The impacts of less ACP utilization can bring heavy financial repercussions as families miss work and incur lost wages, or help with uncovered health care expenses and unexpected funeral or memorial costs.

“These discussions are not just for folks who are at the end of life, it’s part of healthy aging as well,” Kwan said. “It’s a huge way to increase satisfaction, because we can make sure we’re facilitating advance care planning discussions between our patients and their caregivers.”

Advance care planning visits were associated with “significantly less” intensive care use at the end of life the JAMA study found. Compared to those without ACP visits, decedents with access to these services had lower rates of hospital and ICU admissions, emergency department visits and in-hospital deaths. Advance care planning utilization was also associated with lower rates of late hospice referrals, the study found.

The data reflect the important pieces of advance care planning impacts on quality measures in hospice, Kwan indicated.

Earlier hospice access through advance care planning can help improve grief care outcomes as well, according to Kwan. The bereavement support that hospices provide can help caregivers process grief both prior to a loved one’s death and after, he stated.

Families that do not have goals of care conversations or some form of advance directives in place often face significant challenges that carry lasting impacts, Kwan said.

These families can often have complicated grief experiences, Chiaramonte agreed.

“The emotional trauma can be significantly increased by watching a critically ill loved one receive care they may not have wanted,” Chiaramonte said. “Having to see it day after day can leave family members with really traumatic experiences and regret is a big thing that I have seen. Whatever the decision is, you can’t undo it. So it’s really a loving act to the family for a person to fill out some kind of advanced directive to help the medical team understand what the person wanted.”

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