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Serious Illness Strategies and the End-of-Life Experience

Published on 4/11/2018

Hannah Luetke-Stahlman has responsibility for Cerner’s palliative care and community care management strategies. She recently co-authored an article in the Journal of Pain & Symptom Management, Determining Palliative Care Penetration Rates in the Acute Care Setting, in partnership with colleagues at Intermountain Healthcare. She has her Executive Masters in Public Administration from the University of Missouri-Kansas City.  

Today is an exciting and critical time in health care for several reasons. One of the biggest areas of opportunity comes as a direct result of the industrywide shift to value-based care:  Now more than ever, health care organizations are charged with holistically caring for patients in a way that aligns with their values and treatment preferences. 

This is especially important for patients with serious illness, as well as those who are nearing the end-of-life. Health care and death is one of the most important conversations we’re not having in our country. The number of Americans age 65 and older is projected to more than double from 46 million today to over 98 million by 2060. This demographic shift will likely affect our country in a variety of ways, but of great concern should be the enormous impact it will have on health care systems.

While medical advances have allowed many older adults to live longer, healthier lives, many are also living with multiple chronic and serious illnesses. Chronic diseases are the leading cause of death and disability in the United States. In 2014, a RAND study estimated that 60 percent of American adults now live with at least one chronic condition; 42 percent have more than one. They account for hundreds of billions of dollars in health care spending every year. This problem will require large-scale adoption of high-value, low-revenue innovations with dedicated expertise, persistence and ingenuity. 

Earlier palliative care

One potential solution is to incorporate palliative care earlier into the care delivery model of seriously ill people, particularly the top 5-10 percent of patients, who account for approximately 50 percent of spending. Palliative care is specialized care that focuses on addressing the pain, symptoms and stresses of serious illness in both acute and community-based settings. Studies have shown it improves quality of care, patient and caregiver satisfaction, as well as reduces spending when delivered concurrent with treatment. Unlike hospice, patients do not have to have been diagnosed with a terminal illness to receive palliative medicine. It is an interdisciplinary team-based approach that focuses on quality of life, values and goals of the patient. The Center to Advance Palliative Care has laid out these five key characteristics associated with effective palliative care: 

  • Identify the right population in need of care, and adjust services as needs change. There is general agreement that the population at-risk can be identified through a combination of three types of variables: diagnosis, functional limitations and previous health services utilization.
  • Provide 24/7 meaningful (i.e., timely and competent) clinical response to prevent and avert crises and urgent 911 calls or emergency department visits
  • Ensure expert pain and symptom management
  • Assist with decision-making, clarifying patient and family care priorities, and help match treatment and services to these goals
  • Support family caregivers with education, counseling and/or respite 

With the advancements in artificial intelligence and predictive models, we can now much more accurately identify and stratify target populations to provide this extra layer of support, ensuring we are providing the right level of care at the right time in a way that is personalized to a patient and their disease process. In addition, electronic health records and population health management tools are continuously improving the way patient and caregiver goals of care and values are electronically captured to better incorporate their voices and experiences. 

Primary palliative care

However, there will never be enough palliative care providers to care for all the patients in need. Our country is facing a serious national shortage of hospice and palliative medicine physicians. Currently there is one palliative care physician for every 1,300 individuals diagnosed with a serious illness and one for every 20,000 patients with severe chronic illness. The shortage of palliative medicine physicians was estimated at 6,000-18,000 in December 2010, and is only expected to increase. It is more important now than ever that we train and support all clinicians, including primary care providers, to incorporate palliative medicine skills and competencies into their clinical practice. Emphasis should be focused on quality conversations around goals of care and advance care planning, which the Centers for Medicare & Medicaid Services (CMS) pay for as of January 1, 2016. This strategy has been defined by the industry as the primary palliative care approach. 

We know that individuals who have conversations with their clinicians about their values, goals and wishes are more likely to receive the care they want, have fewer non-beneficial medical treatment and report better quality of life. And yet, less than one-third of patients with end-stage medical diagnoses discuss their goals and preferences with their clinicians. The conversations tend to focus on medical procedures and treatments rather than a patient’s values and priorities. 

One example of addressing these challenges is the creation of the Serious Illness Care Program by a team of palliative care experts at Ariadne Labs. Ariadne Labs is a joint center between Brigham and Women’s Hospital and the Harvard T.H. Chan School of Public Health. They have developed an evidence-based tool called the Serious Illness Conversation Guide as part of a six-part program that creates system-level support for all clinicians to have these important conversations with their patients. These structured questions are drawn from best practices in basic palliative care and serve as a framework for clinicians to explore topics that are crucial to gaining a full understanding about what is most important to patients. 

Advance care planning and the end-of-life experience

One last approach is increasing quality conversations both providers and patients are having about their end-of-life wishes, and then recording the outcomes of those discussions in advance care planning documents. Advance care planning (ACP) is a process that supports patients at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The goal of ACP is to help ensure that people receive medical care that is consistent with their wishes. Documentation examples include advance directives, medical durable power of attorney and physician orders for life-sustaining treatment. 

Even though most Americans believe these conversations and documents are important, only about a third have completed an advance directive. Our culture still shies away heavily from the topic of death, instead of embracing it with the mentality that by doing so will help us live better. A survey of more than 1,400 patients, family members and professionals involved with end-of-life care revealed that the most important goals are: 

  • Pain and symptom management
  • Preparation for death
  • Achieving a sense of completion
  • Decisions about treatment preferences
  • Being treated as a “whole person”

But how well do we incorporate these aspects into the clinical delivery of care? How well do we design our technology solutions to support clinicians in facilitating these discussions or documenting outcomes? How often do we involve patients in the design of their fate? Patients want to be asked and they want to be included in the decision-making process about their health and well-being, especially when they have a serious, life-threatening illness. 

We have a responsibility, as an industry, to begin redesigning what the end-of-life experience looks like for patients. It is the one universal concept, other than birth, that unites us all; and one day, we will all go through it. What do we want it to look like?

Although 80 percent of Americans would prefer to die at home, 63 percent die in hospitals and another 17 percent die in institutional settings such as long-term care facilities. Only a fraction end up using hospice services, and those who do often are referred in the last 3-4 weeks of life. 

We have the power now to re-shape this human experience before we are inundated with a rapidly aging population. We need to take the time now to reflect on our end-of-life wishes, while we are in good health, and discuss them with our loved ones, then document them in an advance directive and share them with our medical team. Together, we can shift the culture in our country and begin to embrace serious illness and our own mortality. By accepting our fate, we can truly begin living well.  

Cerner’s performance improvement and clinical intelligence solutions use analytics, algorithms and models to empower users with intelligent data that enables them to impact care when it matters most. Learn more about Cerner’s Palliative Care Solution.