The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
By: Kacy Ninteau, Policy & Advocacy Intern, C-TAC
As the COVID-19 cases climb across the country, nursing homes continue to be among the hardest hit communities. Over 40% of COVID-19 deaths nationwide have been residents and workers at these facilities. What puts nursing homes at greater risk for outbreaks are chronic staffing shortages, which have been intensified by this pandemic, congregate living arrangements, a largely elderly population with serious underlying health conditions, and poor access to resources for testing and PPE. While it is critical that measures be taken to prevent the novel coronavirus from spreading though these facilities, it is also essential that residents with COVID-19 have access to the symptom management and support they want and deserve.
A review of COVID-19 management plans for nursing homes found that they mainly focus on infection control and specific clinical tasks, while guidance for providing palliative or hospice/end-of-life care was essentially left out of most plans. Many do not even mention the non-physical needs residents may have while sick with COVID-19, such as psychological, emotional, and spiritual aspects of wellbeing. They are also often isolated in their rooms for safety and unable to have visitors from the outside, which contributes to social isolation and distress. There is an opportunity to address existing structural barriers to palliative and hospice delivery in nursing homes so that residents with COVID-19, and advanced illness in general, have access to high-quality care that takes into account their wishes for treatment.
Palliative care is a specialized form of medical care focused on a patient’s needs rather than his/her disease prognosis. Often times, this includes managing pain, anxiety, fatigue, shortness of breath, problems with sleeping, and nausea, as well as coordinating care with all providers on the patient’s care team. Studies have shown that palliative care can make treatment for serious illness less stressful and traumatizing for nursing home residents and their families and, at the same time, reduce burdensome and unnecessary hospital transfers. During this COVID-19 pandemic, palliative care teams are uniquely qualified to manage respiratory distress and other related symptoms. They may also be able mitigate fear and stress around a COVID-19 diagnosis using therapeutic presence and touch.
While palliative care has been proven to be an effective option for care, barriers to accessing these services in nursing homes existed before the COVID-19 pandemic and are still in place today. These include nursing home staff not having adequate training on benefits of palliative care, issues with getting the necessary referrals to it, and a limited number of clinicians trained to provide these services. In addition, there may be a misunderstanding that palliative care is only appropriate at the end-of-life, which is not the case. Karl Steinberg, MD, CMD, a geriatrician, family physician and hospice physician in San Diego County and President-Elect of the California Association of Long Term Care Medicine (CALTCM), notes that “the availability of full-scope palliative care services in long-term care, especially in skilled nursing facilities, is very limited outside of hospice enrollment. So many nursing home residents who don’t meet criteria for hospice either philosophically or prognostically would benefit from palliative care. We must design and implement strategies to get these services into these facilities, and to get full-scope nursing home palliative care compensated.”
In addition to improving palliative care delivery in nursing homes, increasing access to hospice services will also help to align care with residents’ preferences at the end of life. Studies have shown that hospice enrollment among nursing home residents decreases hospitalization rates and use of unwanted aggressive treatments while increasing quality of symptom management. While on hospice, residents have access to comfort care for pain, necessary medical supplies and equipment, support for emotional and spiritual issues related to dying, and additional support staff. Hospice benefits can also include grief counseling for families even after their loved one dies. Given the high rates of complex, chronic disease among the nursing home population, the option to receive hospice care at the end of life should be discussed well ahead of time to ensure that enrollment is appropriate and timely.
Hospice utilization in nursing homes has increased over the last decade, but barriers still exist which prevent residents from accessing these services. The culture around death in nursing homes is one barrier to hospice services in this setting. Regulatory scrutiny has led to the concern that any sign of resident decline is due to nursing home negligence, despite the fact that 1 in 4 US deaths each year occur in nursing homes. This can make nursing homes hesitant to acknowledge when residents are at the end of life and can discourage hospice referrals as a result. When nursing homes residents do receive referrals for hospice care, these services are often provided by outside hospice organizations. There is concern now, as the COVID-19 pandemic continues, that inviting hospice providers into nursing homes could potentially increase spread of the virus and put more residents at risk. As a result, especially early in the pandemic, hospice teams were discouraged and even forbidden to physically provide care. Delivering high-quality of end of life care while preventing infection is a challenging task for nursing homes as they are working with limited PPE and access to proper testing. The reality is that COVID-19 patients in nursing homes want and need hospice care, but we must invest resources into these facilities to make it easier for staff to protect themselves and the residents they are caring for. Nursing home quality metrics should be redefined to encourage high-quality, end of life care. At the same time, COVID-19 patients may be hesitant to use hospice because they would have to forgo curative treatment in order to do so. This issue existed before the pandemic, and policies which allow for disease-directed care to continue with the hospice benefit could increase hospice utilization at the end of life, which in turn could lead to more patient-centered care. The Medicare Care Choices Hospice model is one example of how to deliver this type of concurrent care.
What most nursing home residents want during the course of their illness is to be able stay in their facilities, to be surrounded by the people they love most, and to feel relief from their physical and emotional pain. By addressing the limited access to hospice and palliative care delivery in nursing homes, we can prevent unnecessary suffering and pain from COVID-19 as well as lay the groundwork for improving care for all residents moving forward.