BY DR. TERRI MAXWELL AND DR. JASEN GUNDERSEN
WITH THE COVID-19 PANDEMIC disproportionately affecting people who are seriously ill—especially older adults, the supportive role of home-based palliative care support programs (HBPC) has never been more critical. This aging population faces a dual risk, first from the coronavirus and second from the effects of isolation on their physical and mental health.
To begin with, it is important to understand the difference between hospice, palliative care and home-based palliative care. Designed for patients who have six months or less to live, hospice provides pain management, symptom control, psychosocial support and spiritual care to patients with incurable illness and their families.
Palliative care addresses symptoms, relieves pain and maximizes quality of life for people living with serious illness. It provides a layer of help for those who may be receiving curative treatments, such as radiation or chemotherapy. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at point in a serious illness and can be delivered with curative treatment. Home-based palliative care or HBPC, is care delivered in the home with the goal of treating the illness or injury, helping the patient get better, regain their independence and align treatment with goals of care.
Personal contact is the foundation of HBPC—virtual or direct. Conversation and relationship building helps support patients with serious illness and their families, clarifies their values and defines treatment choices in the face of serious illness.
HBPC professionals play a key role in the homes of many individuals who are now more isolated than prior to the pandemic. Technology and telehealth support tools are critical for meeting care needs while avoiding direct contact that might affect the safety of the patient and clinicians. With these tools, HBPC clinicians can reach more people in a shorter amount of time, while also allowing seriously ill persons to remain in the safety of their home environment during the COVID-19 pandemic. It also helps HBPC clinicians conduct sensitive conversations with the patient and family members about prognosis, treatment, advance care planning and goals of care.
As part of this assessment process, they may ask questions such as: at what point would you want to stop treatment and transition to hospice care? What brings you joy? At what point would your life no longer be a life you want?
This change in care delivery may prove significant for brokers because it influences recommendations for Medicare Advantage plans or retiree benefits programs: telehealth will remain a fixture of healthcare delivery to improve access to care and meet the needs of patients and their caregivers.
VIRTUAL INTEGRATION IN THE HOME
Virtually integrated clinical teams help both patients and caregivers participate in discussions regarding COVID-19 treatment, especially decisions regarding ventilator utilization, if necessary, as well as preferences for remaining in the home or options for hospice care.
For many, telehealth is not only essential to delivering palliative care support services to seriously ill patients in the current crisis, but it may also provide a more attractive option than in-person visits for what is for many stakeholders a sensitive and challenging discussion. What’s more, virtual visits can occur more frequently and help to develop relationships that are more robust over time.
In addition, physicians, nurses and social workers can provide help to caregivers and patients working from home. In the process, they are able to continue to build trust, set goals of care, make shared decisions, provide symptom management, identify social determinants of health (SDoH), assess caregiver needs and find community resources.
The challenge is finding ways to ensure that patients with serious illness—and at highest risk of the virus—have adequate food, prescription medications and appropriate social contact. To protect patients and clinical teams from potential exposure to the virus while maintaining commitments to seriously ill patients, many HBPC programs have altered their care delivery methodologies and approach.
Telehealth and virtual care have emerged as an important way to provide access to clinical care, address the impact of social determinants of health and enhance the role of HBPC clinicians.
HBPC BEST PRACTICES DURING THE PANDEMIC
Home-based care programs, including palliative care programs for persons with serious illness, quickly needed to pivot their care models to limit exposure to both clinicians and their patients and families when COVID-19 first appeared. For example, Turn-Key Health, a Carecentrix company, immediately transitioned its HBPC clinical team from primarily in-home assessments to largely virtual care support. This change minimizes direct contact between providers and their seriously ill patients to limit any possible exposure to COVID-19. Despite these changes to protocols, the team continues to exceed clinical performance standards and achieve high patient and caregiver satisfaction.
Patients with special or urgent needs continue to receive home visits from the programs’ nurses and social workers based on a protocol for identifying priority patients and following strict guidelines for screening and use of personal protective equipment.
During the first months of the pandemic, recognizing their increased risk and special needs, the palliative care nurses and social workers contacted patients who lived alone or had risk factors, such as cardiac or pulmonary disease weekly. During these calls, they reviewed the CDC guidelines on hand-washing and reminded all patients of the importance of maintaining social distancing.
On an ongoing basis, the clinical team also provides patients specific instructions about what to do if they or their caregivers become ill. These check-in calls continue to cover other ground, offering the opportunity for staff to help a patient access food, medication and household goods by providing information about organizations that deliver food and supplies. They also take action to help ensure that patients have prescription refills and access to medication delivery.
At a time with much attention given to the urgency of the COVID-19 pandemic, HBPC teams are not losing sight of chronic disease management. During calls or video conferences to patients and their caregivers, nurses evaluate new symptoms and provide education and support to make certain that patients are managing their diabetes, hypertension, heart failure and pulmonary disease. This can mitigate negative health effects and prevent emergency room visits.
“while the pandemic has increased the challenges of navigating health
and wellness for aging and retired populations, it also gives
brokers an opportunity to highlight the value of HBPC
when reviewing coverage options with clients
and point out its important role in helping individuals
in the transformation from home health to home-based care.”
These calls, telephonic and video visits by clinicians also provide a personal connection greatly needed to help combat social isolation, especially for those living alone. Additionally, they allow the nurses and social workers to assess for signs of depression, anxiety or mental status changes such as confusion or signs of stress in caregivers.
When in-home visits are feasible, the team monitors for changes in the patient’s mobility or ability to perform self-care, assesses the risk for falls or self-neglect, and evaluates the need for referrals to community-based services that bolster support for meal delivery, access to prescription medications and other issues.
These teams also engage patients in the important task of COVID-19-specific advance care planning. They use specially developed communication and decision support tools to initiate these conversations, which proactively address concerns and establish the patient/family goals of care if there is a decline in the patient’s health, progression of disease or they become acutely ill with COVID-19.
Turn-Key’s clinical operations team meets regularly to review current COVID-19 data regulations to identify the need for additional modifications and provide timely updates to their partners. A real-time dashboard to monitor COVID-19-related patient outreach activity is critical, as well as the need to examine any impact on clinical key performance metrics (KPIs) to enable prompt response to any concerns.
REAL PATIENT STORIES FROM THE PALLIATIVE CARE FRONT LINES
Patient stories based on real-world situations illustrate the unique challenges of COVID-19 for seriously ill persons at home and the ways in which HBPC programs provide much needed care and support.
Patient # 1 – A 63-year-old male with COPD and lung cancer who lives alone. During a phone call with an HBPC nurse, he disclosed feeling fatigued, mildly short of breath and had a moderate cough and pain. His breathing sounded congested over the phone, but he did not have a fever. The nurse reviewed COVID-19 signs and symptoms, including a fever over 100.4, dry cough, sore throat, muscle and joint pain and difficulty breathing. The nurse instructed him to check his temperature every four hours and call back if a fever or any distressing symptoms developed. The nurse continued to check on him daily. By the third day, his condition was not significantly better. After consultation with his primary care provider, he went to a walk-in clinic and received Doxycycline for a non-COVID-19 upper respiratory infection. His cough and congestion improved with the antibiotic and his nurse continues to monitor him weekly.
Patient #2 – A 69-year-old female with amyotrophic lateral sclerosis (ALS), a progressive motor neuron disease. She receives weekly calls from her HBPC team to monitor her fragile health status and make sure she has support during COVID-19 lock down because she lives alone. She relies on daily Meals on Wheels, but deliveries stopped during the crisis. Her social worker arranged a family meeting over the phone with her and with her estranged family to request support to obtain groceries and meal delivery. During the call, her grandson agreed to pick up groceries and drop off food. The clinician reviewed COVID-19 signs and symptoms, including a fever over 100.4, dry cough, sore throat, muscle and joint pain and difficulty breathing, and encouraged her to practice social distancing, masking and proper hand hygiene during food drop-offs.
Patient #3 – A 75-year-old female who lives alone. She has diabetes with multiple complications including lower leg amputation. She receives assistance from a program that places caregivers in the home for several hours a week. Although she is grateful for this support, she was very concerned and anxious that her caregiver was not following proper hand hygiene. In addition, she was afraid to venture out of the home for groceries and medicine. Her HBPC nurse provided tips on ways that she could talk with the in-home care provider about hand hygiene. Ultimately, at her request and after conferring with the nurse, the company replaced the care provider with someone with whom she was more comfortable. The HBPC clinician also arranged for her to obtain free home delivery of her medications and identified a neighbor who agreed to deliver groceries. Her nurse continues to provide telephonic support weekly.
While the pandemic has increased the challenges of navigating health and wellness for aging and retired populations, it also gives brokers an opportunity to highlight the value of HBPC when reviewing coverage options with clients and point out its important role in helping individuals in the transformation from home health to home-based care.