The toll of the COVID-19 pandemic on the healthcare industry has included a major impact on hospice and palliative care, particularly intensifying the negative physical, mental, emotional and spiritual effects on members of the senior population and their families. Even more troubling is the current lack of availability of palliative and hospice care across many communities in the country. It’s even gotten to the point where new patients are being turned away or put on a wait list to receive care.
Unfortunately, this is not a new situation as increasing demand prior to for hospice care had created shortages in specially trained physicians and teams, palliative care medications and bereavement support for patients and their families, according to a doctors’ viewpoint published by the Journal of the American Medical Association (JAMA). The arrival of the coronavirus simply exacerbated the situation, as social distancing requirements and a lack of personal protective equipment (PPE) prevented face-to-face interaction for a population that sorely needs it. In addition, community-based palliative care options became even more limited during the pandemic due to staffing limitations, while others utilized strictly telehealth.
Dr. Jill Schwartz-Chevlin, FACP, senior medical officer and national palliative care lead at Landmark Health, believes that the current state of inadequate access to palliative care is directly leading to patients suffering. At Landmark Health, palliative care services are part of their in-home medical care model.
“Many programs pulled back from doing face-to-face visits in favor of telemedicine visits, further reducing face to face interactions, leaving patients further isolated from their community providers,” said Dr. Schwartz-Chevlin. “In addition, frail, medically complex patients often with cognitive and sensory limitations are not able to fully participate in telemedicine visits, further limiting the reach of community palliative providers.”
How to address limited access to adequate palliative care services
The good news is that there are ways of addressing the shortages of palliative care providers. These solutions may not fix things over night but are certainly the right way forward to overcome hurdles such as pandemic-fueled fear of COVID-19, the ‘great resignation’ and vaccination hesitations.
Dr. Schwartz-Chevlin suggests one short-term plan to address severe shortages is by ensuring that every care team has at least one provider proficient in palliative care that can act as the palliative subject matter expert for the group. This person can help to address complicated issues, help with training and coaching, and engage in relationship building with specialty palliative care practices with assistance for more complex patient management issues.
For a long-term approach, she recommends potentially training all clinical-facing staff to be proficient in providing primary palliative care which would include having goals of care conversations with patients, understanding the patient journey and the impact of their medical conditions on their life.
“Clinical-facing staff would then be able to discuss functional impact with their patients while also having a better understanding on what matters most to the patient,” Dr. Schwartz-Chevlin said. “Developing care plans around these wishes and values, attending to and managing symptoms related to their serious illness, and working collaboratively with patients and their care team is what’s best for the patient’s journey and overall experience.”
Hospice care agencies are hurting, too
As for hospice care, Dr. Schwartz-Chevlin believes that the biggest shortcoming for hospices and nursing agencies since the start of the pandemic has been about staffing. Because of these shortcomings, patients may end up choosing against short-term inpatient rehab due to fear of COVID-19, leaving them to rehabilitate at home but with fewer supports in place. More than 1.6 million Medicare beneficiaries received hospice care in 2019, the latest year for which figures are available, according to the National Hospice and Palliative Care Organization (NHPCO).
“These limitations have put more pressure on existing staff in facilities, and family members at home, to help fill the voids left by lack of care from nursing and hospice agencies. Facilities will need to develop protocols for deaths without hospice; and provider groups may need to develop ‘home death without hospice’ protocols to permit patients to die at home with as much support as family and community providers can offer.”
Home death without hospice protocols include details regarding comfort kit medications, with dosages, and indications, local pharmacies that carry these medications, local non-emergency police numbers, coroner/medical examiner’s numbers and other local contacts that may be helpful. In addition, awareness of the benefits of hospice can help seniors and their family members make earlier decisions to enter a hospice program — when there’s still time to benefit from the specialty care that is offered. Too often, that decision is made in the final week of an individual’s life.
But one of the biggest things to remember – palliative care and hospice care are two different things.
“A huge misconception among patients, family members and many providers is that palliative care is synonymous with hospice and end of life care. This is not correct. The majority of palliative care is provided concurrently with curative management. Only a subset of patients who have a terminal condition and have an expected life expectancy of six months or less, are eligible to receive hospice services,” Dr. Schwartz-Chevlin clarified.
Whatever one’s role in the palliative and hospice care picture, readiness is a key factor. The optimum outcome will occur when a patient and their family have planned for possible future health events; when providers have prepared their facilities for a potential surge in demand; and when all involved are well informed about the need for, benefits of and challenges facing palliative and hospice care organizations.