For Hospice Care, a Pressing Need to Ensure Quality for Patients and Families

Editor’s Note: This is the final of four AHRQ Views blog posts written by the Agency’s National Advisory Council members about their discussions on advancing healthcare quality in different care settings. The Council provides advice to AHRQ's director on Agency activities and priorities. This blog does not necessarily represent the views of AHRQ.

With the expanding patient population of older Americans, there is a dramatic rise in the need for hospice care in the United States. Hospice care is a healthcare option that focuses on comfort and quality of care as patients approach the end of life. Hospice is considered when a patient no longer chooses to pursue further treatments or there may not be a possible curative treatment.  

Hospice care can be offered in different settings such as a home, assisted living facility, hospital, or hospice center. Whichever location is chosen, patients must discuss their options with their family members and healthcare team. With rising concerns about the quality of care in hospice, little is known about the current quality of care and how it varies across hospice programs. 

From a systems standpoint, high-quality hospice care should be person-centered, coordinated across all care settings, improve clinical outcomes (such as pain and satisfaction with care), be provided by a multidisciplinary team, and reduce unnecessary healthcare utilization.  

But what does receiving quality care look like for patients and families?

It is essential to capture and understand patient and family perceptions of and experiences with end-of-life care. In healthcare quality research, there can be a disconnect between patient perceptions and experiences of the healthcare received and patients' satisfaction, because it remains unclear how perceptions of healthcare quality, experiences, and satisfaction are measured. For example, quality of care may need to represent maintaining open lines of communication around patients’ goals and wishes, including their expectations at the end of life, desired caregiver outcomes, advanced care planning, or emotional and spiritual support needed.

Workforce issues such as inadequate staffing, provider burnout, job dissatisfaction, and turnover also affect hospice providers. However, the emotional toll that end-of-life care takes on staff makes these issues more acute and begs the question: is counseling available?

There are several options that, if implemented now, might improve the quality of hospice care. Care structures that have certified physicians qualified for the patient's complexity of care and treatment requirements may provide near-term benefits, particularly as more remote monitoring and telemedicine options are becoming available. Transdisciplinary teams available at the location and context of care, additional reimbursement, and required public reporting of potential quality metrics from the patient perspective might also improve hospice care.

There is a need to define outcome measures in the hospice setting which are not overly complex but are actionable, applicable, and meaningful to patients and caregivers. In a recent study, hospice staff noted challenges associated with measuring advanced care planning beyond quantitative, objective measures. Staff remarked that "sometimes things don't fit in a box,” when it comes to conversations that capture the complexities of end-of-life care.

AHRQ could provide tools and research to further study structures, metrics, processes, and innovative technologies to bring value to the quality of care in all hospice settings.  In tandem, quality measures should be aligned with patient outcomes in ways that do not create disincentives for appropriate care (e.g., a return to the hospital for a hospice patient whose goals have changed).

As older Americans continue to rely on hospice for their end-of-life care, there needs to be a call to action across all Federal healthcare agencies, ensuring patients and their loved ones receive the quality of care they need. Through these actions, it is crucial to move to the next level of quality of care by having a better balance between advancing and supporting end-of-life care.

We need to understand patient values for end-of-life care and ensure the quality of care they receive is aligned with their values. This is a critical component of hospice care. We all deserve to die with dignity and comfort.  

Krista Hughes is the Founder and CEO of Hughes Advocacy, Passion 4 Patients. Andrew D. Auerbach is a Professor of Medicine in Residence at the Division of Hospital Medicine, University of San Francisco.

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