Early Goals-of-Care Talks Could Improve Hospice Access for Dementia Patients

Terminally ill patients suffering from dementia are more likely to receive life-sustaining treatments when children versus spouses were involved as decision-makers, according to recent research. The difference in end-of-life treatment choices suggests that more work needs to be done to ensure that surrogate decision makers and care teams are aware of patient preferences as early as possible.

A study in the Journal of Pain and Symptom Management examined ties between the end-of-life wishes expressed by 742 patients with cognitive impairment or dementia and the care they ultimately received. 

Children of these patients participated in 83% of the goals-of-care conversations, while spouses participated in roughly 35%. About 18% of the conversations included both spouses and children, creating some overlap.


These results indicate a need for hospices to engage with families earlier in their disease process and educate them about their care they provide, according to study co-author Lauren Hersch Nicholas, associate professor of health systems, management and policy at the Colorado School of Public Health.

“Many of the patients in our sample would be appropriate for hospice care and did not necessarily receive it, or receive it as soon as they may have qualified,” said Hersch Nicholas. “This points to a need for hospice staff to potentially reach patients and families earlier in the process and integrate with the care team.”

The findings suggest that goals-of-care conversations are occurring too late or not at all, and with the “wrong people at the table,” according to Jennifer Flugaur, vice president of clinical excellence at Agrace. The Wisconsin-based hospice and supportive care provider in 2020 opened a dedicated memory care unit to patients at its Madison location.


Creating an open dialogue with patients and their families about potential end-of-life outcomes and treatment options is a key component of the hospice model, Flugaur told Hospice News. These conversations can be particularly important for patients with dementia and other cognitive impairments, she stated in an email.

“If patients with dementia would have earlier access to hospice care, these discussions could be facilitated by experts in the field, and potentially reduce unnecessary or unwanted interventions for patients as their dementia progresses — all while supporting the patient and their decision-makers in the process,” Flugaur said.

Hospices have been caring for a rising number of dementia patients in recent years. About 15.6% of hospice recipients during 2018 had some form of dementia as a primary diagnosis, according to the National Hospice and Palliative Care Organization. This amounts to more than 177,000 people nationwide.

These numbers will likely continue to trend upwards. Roughly 13.8 million adults 65 and older in the United States will have Alzheimer’s dementia by 2060, according to projections from the Alzheimer’s Association. This is nearly double the estimate of 6.2 million patients currently diagnosed with that condition.

Hospices will play an important role in caring for terminally ill patients suffering from cognitive decline.

To ensure that these patients are able to receive the full benefits of hospice, advance planning conversations need to happen earlier for dementia patients compared to those with other terminal diagnoses, according to Jennifer Sheets, president and CEO of Interim HealthCare, a subsidiary of Caring Brands International. Interim HealthCare provides specialized dementia care in addition to hospice, home health and palliative care.

The time to discuss options could be years before the patient is ready for hospice, Sheets told Hospice News in an email.

To encourage these early discussions, hospices should engage with other health care providers to educate clinicians, patients and their families about the benefits and quality of their services as well as the importance of advanced planning, according to Sheets.

“Specifically with a dementia diagnosis, it is best to first educate the family about what to expect and how the disease will progress so that they can discuss wishes and options with the patient before their cognitive ability becomes extremely compromised,” Sheets said. “Waiting until the patient and family are in crisis is not the correct approach. Failing to appropriately walk a patient and their family through end-of-life planning and expectations often leads to the misconception of the [hospice] benefit and adds to the reluctance of decision-makers to choose this setting.”

Hospice and palliative care clinicians have “much to learn” when it comes to building plans of care that reflect individual patient and family goals within the scope of dementia diagnoses, according to Flugaur.

Learning more about dementia and associated comorbidities can present opportunities for engagement while also potentially reducing high-cost health care services that may conflict with patient wishes.

“As we learn more about what to expect, including how to best prognosticate different types of dementia, there is the strong potential to reduce burdensome and costly care as the patient’s progress in their disease process,” said Flugaur. “[This] may allow them to age and die in the place that is meaningful to them, whether that be their private residence or another location of care.”

Addressing the rising prevalence of dementia could prove complicated for hospices due to the condition’s relatively unpredictable trajectory.

Hospice patients with dementia are at increased risk for live discharge and longer lengths of stay, according to a report from the Journal of the American Geriatrics Society. Nearly 40% of almost 4,000 patients with dementia who received hospice services from 2013 to 2017 experienced a live discharge or length of stay exceeding 180 days.

Regulators often consider longer length of stay and high rates of live discharges to be red flags that could trigger an audit.

“Given the various reasons for live discharges, we expect that hospices will have some live discharges, but interpret a high rate of live discharges as potentially suggestive of quality of care issues,” a 2019 Government Accountability Office report indicated. “A high live discharge rate could in some cases be an indicator of poor quality of care provided or of provider misuse of the benefit, in that they may be enrolling beneficiaries who are not eligible for hospice.”

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