Family illness brings palliative care, other policies into focus

Personal experiences play out amid public health policy debates.

As someone solidly within the Gen X demographic, I find myself at a point where I'm not only getting ready to send my kids off to college but also stepping in to help care for my parents. Over the past year, my stepfather was hospitalized for an acute illness and then had to enter rehabilitation before returning home. My father experienced a relapse of a previous cancer diagnosis.

Both events led me to fly “home” to Kentucky to assist in care transitions and caregiving—and ultimately, in my father's case, to address his and my stepmother's wishes upon his death. I am deeply grateful that my complex family, made up of step-, half-, and full siblings, along with significant others, friends, aunts, uncles, and more, is consistently able to band together when needed for these difficult life events. Yet these events also reawakened my personal awareness of the issues in our country with palliative care, advance care planning, and long-term care services and supports.

ACP's current policy regarding palliative care has been in place since 2004, with amendments taking place over time to ensure it is still relevant. Importantly, this policy speaks to the fact that patients and families often do not know what hospice or palliative care is or how to go about starting it. Even those who do, like me, feel somewhat powerless when a family member is suffering from a serious illness, particularly if the outcome is uncertain.

Guidelines from the National Consensus Project for Quality Palliative Care state that palliative care applies to all people with serious illness, regardless of setting, diagnosis, prognosis, or age, and that timely consideration of palliative care is the responsibility of all who care for the seriously ill, including primary care physicians, subspecialists, and hospitalists. Along these lines, the College calls for physicians to seek appropriate palliative care consultation when doing so is in the patient's best interest, to know when and how to use home-based and institution-based hospice care, and to be aware of the palliative care capabilities of nursing homes to which patients are referred.

Advance care planning is also critically important, as it allows a person with decision-making capacity to develop and indicate preferences for treatment and choose a surrogate to act on their behalf if they cannot make their own health care decisions. It allows the patient's values and circumstances to shape the plan with specific arrangements for implementation. Yet, according to a 2017 systematic review published in Health Affairs, only approximately one in three adults in the U.S. has completed any type of advance directive. While this has increased over the past several years, potentially due in part to the COVID-19 pandemic, there are still a significant number of Americans over the age of 55 without advance directives, as described in a July 2020 article in JAMA Network Open.

ACP policy calls on physicians to routinely raise the idea of advance care planning with adult patients with decision-making capacity and encourage them to review their values and preferences with their surrogates and family members. As my colleague Dejaih Johnson, JD, MPA, recently stated in a September 2022 ACP Internist article on advance care planning, “Internal medicine physicians are uniquely situated to have these conversations as they share longitudinal relationships with their patients that span multiple encounters, making advance care planning conversations possible before critical illness or hospitalization.”

In 2016, CMS launched two codes that allow clinicians to bill for advance care planning services (99497-99498). This is likely another contributor to the increase in use of advance directives. However, at that time, it reignited the “death panel” hype that had occurred during the negotiations over the Affordable Care Act (ACA), with some conservative lawmakers saying the codes promoted a “life-devaluing policy.” Thankfully, the misinformation around advance care planning seems to have since subsided substantially.

The College was actively involved in the development of the advance care planning codes and continues to strongly support their use. ACP also offers a learning module with our “Coding for Clinicians” resource, focused on preventive visits, including advance care planning, the “Welcome to Medicare” visit codes, Medicare Annual Wellness Visit codes, and well-child service codes.

The illnesses faced by both my stepfather and my dad also were a stark reminder to me of the challenges for caregivers if or when an individual can come home after or between hospitalizations, stays in rehabilitation centers, or other facility-based care settings. The live-in caregiver for my stepfather was able to receive training to better attend to his short- and longer-term needs, which was a significant relief for the entire family. However, the time that my father was home between hospitalizations while we were awaiting test results and treatment plan options was both wonderful—that he could be at home for a period of time and we could all be together—and tremendously trying on the family as we worked to care for him. We felt very much in the dark about what might be the best courses of action to ensure he was getting enough nutrition and was comfortable and safe. The physical and emotional toll was significant even with several of us there to help. With that said, I am eternally grateful that my dad could be home for a time and that my stepfather has returned home for the foreseeable future.

While most long-term services and supports (LTSS) are provided by unpaid caregivers, such as family and friends, the U.S. does offer several options, including nursing homes, assisted living facilities, and home- and community-based services (HCBS). ACP recently released a policy paper, titled “Long-Term Services and Supports for Older Adults,” that calls for strengthening the LTSS sector to ensure that patients can maintain quality of life and financial stability as they age. This paper outlines the need for a new mandatory, catastrophic LTSS benefit; reform of the private long-term care insurance (LTCI) market; improvements in LTSS quality; policies to encourage HCBS; support for the LTSS workforce and informal caregivers; transparency in LTSS ownership and financing; and improved emergency response policies to ensure the safety of patients and staff during pandemics, natural disasters, and other events.

Fortunately, many of these issues also seem to be on the mind of the Biden administration. In February 2023, CMS released a proposed rule that would require disclosure of certain ownership, managerial, and other information regarding Medicare skilled nursing facilities (SNFs) and Medicaid nursing facilities. Nursing homes are already required to report direct and indirect ownership data through the Provider Enrollment, Chain, and Ownership System; they are also required to report when a change of ownership occurs. However, ownership data are often incomplete or inaccurate, and concerns have been raised that convoluted ownership frameworks are being used to evade regulation, disclosure requirements, and liability. Additionally, evidence shows that private equity investment may be associated with increased health care utilization and spending and lower quality care in the health care sector. This new rule, should it be implemented, would be a step in the right direction, and ACP has called on CMS to move forward to ensure that Medicare SNFs and Medicaid nursing facilities fully disclose ownership information.

In April 2023, the Biden administration released a new executive order (EO) intended to expand access to long-term care and child care. This new EO includes many policies that are supported by ACP, such as:

  • leveraging Medicaid funding to ensure there are enough home care workers to provide care to older adults and people with disabilities enrolled in Medicaid, and to build on the minimum staffing standards for nursing homes by conditioning a portion of Medicare payment based on how well a nursing home retains its workers;
  • testing a new dementia care model that will include support for respite care for primary family caregivers and that will make it easier for family caregivers to access Medicare beneficiary information; and
  • directing the Department of Veterans Affairs (VA) to improve access to home-based care for veterans who require support with activities of daily living.

ACP will be actively watching and advocating for the appropriate implementation of the new CMS rule and EO over the coming months. It is critically important that they be implemented in a manner that works not only for the physicians and other clinicians involved in the care of older adults, but also for the patients, families, and caregivers that will all be impacted.

As someone who considers herself a health care wonk, it can be quite humbling when coming face-to-face with the system on a very personal level. It made me deeply grateful for the work that ACP does on many fronts, in addition to what I discussed here. I also want to express my extreme gratitude for all the physicians, nonphysician clinicians, and so many others who work in our health care facilities for their compassion toward my stepfather, my dad, and our entire family during these difficult times. Sometimes you do hear horror stories about experiences in the health care system, but fortunately this time—even when the outcome was not what we hoped for with my dad—my family and I were able to experience kindness beyond expectation.