End-of-life planning is a critical part of the services that persons nearing the end of life need, as is end of life care.
PACE programs respond to this need with their expertise, staff and systems in place to support families to undertake this very personal process in a way that empowers enrollees and helps to ensure they are cared for according to their wishes and treated with respect and dignity at the end of their lives. The PACE programs are set up to support access to high-quality end-of-life planning. Their small size, their attention to quality, and their fully integrated model of care remove barriers that prevent many seniors from receiving appropriate end-of-life planning.
This issue brief will discuss the key elements of end-of-life planning, as well as barriers to end-of-life planning happening; and finally, how PACE makes end-of-life planning and care a key component of its program by leveraging its integrated and personal model of care delivery.
PACE Programs Ease the Worry for Many Enrollees by Providing End-of-Life Planning
Through the PACE program, thousands of older adults who are nursing home eligible by the state’s standards receive end-of-life planning. As importantly, PACE Programs partner with participants and family members as care needs evolve through end of life.
PACE Programs are responsible for ensuring that over 80 percent of their enrollees have used the MOLST program for shared decision-making.
Key Elements of End-of-Life Planning and Care
End-of-life planning can encompass a wide variety of tools, processes and services that surround care and well-being in the final six months of life. Examples include the development of an advance directive or living will, use of the Medical Orders for Life-Sustaining Treatment (MOLST) program for shared decision-making at the end of life, and choosing a health care proxy or power of attorney.
Health care providers and families can use a variety of models to help guide patients through questions and decisions about their care before a crisis occurs to ensure that patients’ wishes are followed. The process includes many difficult questions such as whether to be resuscitated, whether to be put on a ventilator, whether to donate organs after death. That said, advance care planning improves quality of care at the end of life, including less in-hospital death and increased use of hospice.1 The planning process also increases patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives.2 The planning process generally addresses questions like:
Barriers to End-of-Life Planning
End-of-life planning would ideally be part of aging for most people, whether it is initiated by families, financial planners, or health care providers. However, it often emerges as a key unmet need when a person’s health is declining to the point that they require increasing support or a nursing-home level of care.
Only 35% of adults have put their end-of-life treatment wishes in writing, though 72% have thought about them and a majority have discussed them with someone else. Americans with higher incomes and levels of education are more likely to have documented their wishes.3 Public awareness of the tools and options for end-of-life planning is limited, so health care providers are often in the position of introducing these difficult questions.
Physician and national expert on the end of life, Atul Gawande, said recently that while reported rates of end-of-life wishes being honored in Massachusetts have increased from 58% in 2016 to 71% in 2018:
“I think it’s a bad sign for us in the medical profession that patients have so much better care when they have the conversation about what the wishes for their care turns out to be and yet, the majority of the time, the patients have to initiate the conversation. We’ve got a long way to go.”4
How providers initiate and support end-of-life planning—and provide the type of care that patients express preferences for—is critical to fulfilling end-of-life wishes. This includes ensuring that advance directives or other agreements on the type of care to be provided are communicated to, understood and followed by the care team; providing palliative care; and supporting patients and families through grief and the other challenges related to the death of a loved one.
Barriers to end-of-life planning can include lack of staff training or time to focus on these issues, care models that do not assign responsibility or establish processes to ensure that end-of-life wishes are documented and adhered to. These topics are often difficult for providers as well as patients and families to discuss during a stressful time; they also require communication by the care team to complete the planning process and make any adjustments as needed.
How PACE Programs Integrate End-of-Life Planning and Care
The PACE model integrates and promotes end-of-life care, centered around quality of life, and takes a holistic, personalized approach that is suited to providing these services effectively. PACE programs coordinate and provide all preventive, primary, acute and long-term care services so that individuals over age 55 can continue living in the community, rather than in a nursing home as they otherwise would need to. PACE programs reduce the fragmentation of health care services that often makes the end of life more difficult for patients and their families, using an interdisciplinary care team (IDT). The interdisciplinary care team approach integrates specialists in care for older people as well as social supports, in a more holistic model that fosters personalized care.
In Massachusetts, the average enrollment for PACE programs was 640 enrollees across the eight programs ranging from about 250 to about 1,500 enrollees. The typical PACE program is small, enabling personal relationships between enrollees, families and providers. PACE enrollees are able to live more independently, with 87 percent living in the community rather than in a nursing home. At the end of life, PACE enrollees are more likely to be able to die at home rather than in a health care facility, as most Americans would prefer to do.5
End-of-Life Planning in PACE and Care
PACE physicians are geriatricians trained to initiate end-of-life discussions with patients and families, and the personalized, holistic team-based PACE approach supports the planning process through the end of life. The PACE model includes comprehensive assessment upon enrollment, and the use of tools such as the MOLST to set priorities for end-of-life care from the outset. All patients receive information about end-of-life care during the PACE intake process, the initial assessment, the post-enrollment care conference with the care team, and at a family care conference that is offered when the patient becomes eligible for end-of-life care. PACE teams can use daily rounds and weekly team reviews of patients who are close to the end of life to ensure that planning conversations happen, and that the resulting information is documented and shared.
National PACE guidelines recommend that PACE organizations establish an End-of-Life Committee specifically to promote quality in end-of-life care in the organization. Participants’ care evolves naturally as health deteriorates and needs change. While statistics show that most Medicare beneficiaries who access hospice, do so for only a few days at end of life, PACE participants receive seamless palliative and end-of-life care by the same highly trained staff who know them and have cared for them, sometimes for many years.
The Massachusetts PACE program is nearly 20 years old. It is a powerful program as a model for end-of-life planning. PACE is the first truly integrated program of its kind operating alongside the big health plans and provider systems. The PACE program continues to enable frail enrollees to remain in the community and plans to do so for many years to come.
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ABOUT THE AUTHOR
Candace (Candy) Kuebel, LCSW, MSW, MBA, entered the elder services arena mid-career while trying to source and manage resources for her parents, in-laws, and step-parents across three states. She interned as a MSW for Element Care PACE, and then went on to work as a Business Development officer there, doubling the agency’s footprint from 23 to 51 communities in just under four years. She then went on to work as the Director of Member Services for Mass Home Care, an association representing the state’s Area Agencies on Aging, and Aging Services Access Points. Candy was hired as the first Executive Director of the MassPACE Association in January, 2016, where her passion and belief that PACE is the gold standard in community-based care for elderly and persons with disabilities continues to thrive.