FAQs About COVID-19 and Palliative Care

CAPC is listening to your concerns and challenges around the COVID-19 pandemic, and we’re here to help. Here are answers to some frequently asked questions. Please use our open source toolkit for COVID-19 rapid response resources, and register for Virtual Office Hours to connect with colleagues across the country and share ideas.

Communication

We are encouraging all clinicians to reach out to their patients who are over the age of 60, or have one or more serious illnesses, to preemptively have a conversation about what they would want to do should they become sick with COVID-19. The CAPC COVID-19 Response Resources toolkit has a script you can follow while you’re having these conversations by telephone or video conference. Organizations can include the conversation script and documentation template in their EHR, and then send a communication to all clinicians, asking them to reach out to their patients to have this conversation, and document what they want.

These pre-emptive conversations will not be strange for patients and families, who will likely be relieved that someone is calling them to talk through their options. Additionally, there has been some public polling among patients with serious illness, which demonstrate that no one on their health care team has reached out to them, and they want that outreach. We also recommend finding out what hospices, certified home health agencies, and skilled nursing facilities in your community are prepared to take COVID-19-positive patients.

CAPC is convening leaders of hospice agencies, home health agencies, nursing homes, and assisted living facilities that are already caring for patients and residents with COVID-19 to share guidance and lessons learned. If you represent one of those organizations and you would like to share strategies you think we should know about, please connect with us through this form.

All of us know people who are very scared right now—not only scared of getting sick from something they can’t see and can’t protect against with any certainty, but also scared of what they are hearing about scarcity of medical resources. It is a good time to ask if they have thoughts about what they would want if they were to become seriously ill with COVID-19—would they want to go to the hospital or stay home? If they were to stay home, we would need to be able to assure that they have access to meticulous care in symptom management, via hospice.

Some hospices are prepared for this surge, while others are not. We must work with our colleagues who take care of people at home, especially hospices and home care agencies, about their readiness and willingness to take care of people at home that choose not to go to the hospital. And getting clear documentation of those people’s wishes before they lose capacity will help their families—not to mention the very strapped health care system—in making decisions about who needs to come into the hospital and who doesn’t. The Patient and Family Support Resources section of CAPC’s COVID-19 Response Resources toolkit has a downloadable tip sheet families can use to be prepared.COVID-19 Crisis Standards of Care References

While many institutions, and even states, have guidelines for crisis standards or care, we have fortunately not seen the need for these to be implemented. Health systems and hospitals have created capacity to honor autonomy and provide goal concordant care. If your organization has committees working on crisis standards of care we would encourage you to try to be involved. Virginia Commonwealth University has compiled a list of reference articles around this topic.

Clinical Care

Since it’s common for patients on hospice to have comfort packs in the refrigerator, hospice pharmacies are very familiar with filling them, and usually have the drugs on hand. Start right now, if possible. It would be very helpful to have these ready once the surge starts to hit your community.

The first step is to research who your hospice pharmacies are, and ask if they can scale up creating comfort packs for non-hospice patients, who may choose to stay at home during this pandemic. With that in mind, hospice pharmacies in larger cities, such as New York City, which supply home care agencies and hospices, may be too small to do this rapidly, in order to meet the needs of large health systems. In cases like this, creativity is key.

As an example, The Mount Sinai Health System worked through the medical school pharmacy, which did a remarkable job working with the companies they ordered drugs from. This included creating protocols and sign-offs, and arranging 24-hour courier services to deliver comfort packs to patients, at any hour. The pharmacy has also been flexible. Clinicians wrote very clear and simple instructions, with photos of each of the bottles and a syringe, to help patients feel more comfortable and sure they're using the right medicine. The instructions included things such as how to fill the syringe to the right level and where to put it under the tongue or in the cheek. And finally, clinicians set up a 24/7 phone line for any questions, if the initial or second dose doesn't bring relief. (Please note that it may need to be different for different health care systems.)

It’s important to realize that comfort packs need to be adjusted to fit what your local pharmacists can procure. The process takes time, and the instructions have to fit what medications you're able to procure. Medications in a comfort pack generally include an opioid (e.g., morphine), an antipsychotic (liquid haloperidol), a benzondiazepine (e.g., liquid Lorazepam), and sublingual ondansetron or equivalent for nausea. You can include acetaminophen suppositories for patients who can't swallow pills, and anticholinergic atropine for respiratory secretions.

An example reference sheet for patients on how and when to use in-home comfort pack medications to manage symptoms can be found in the CAPC COVID-19 Response Resources toolkit.

Goals of care conversations and recommendations around CPR and mechanical ventilation certainly apply to palliative care teams, but it is important to remember that ventilator withdrawal, CPR protocols, and triage are not the role of palliative care. We are learning more about the risks, benefits, and outcomes of CPR and ventilatory support as it pertains to COVID-19. Teams from multiple disciplines, epidemiologists, and public health officials will help guide what defines standard of care as it pertains to the benefits, limitations, and outcomes of CPR and mechanical ventilation.

Role of Palliative Care

The skillsets of palliative care teams center around expert pain and symptom management, skilled communication, and coordination of care and support for our patients, families, and colleagues. To create capacity for palliative care to reach as many patients as possible, and to preserve scarce resources (e.g., PPE), teams can use telehealth, 24-hour hotlines, share clinical tools (e.g. CAPC’s COVID-19 toolkit), and save in-person visits for people with complex palliative care needs, who are unresponsive to first line treatments. The toolkit includes resources for clinical assistance protocols, telehealth guidance, billing opportunities, and more)—to help palliative care teams, and colleagues across other specialties and disciplines, meet the needs of patients and families.

Teams can leverage telehealth support for patients and families, and our colleagues. Some ideas that are being implemented nationwide are the development of 24/7 hotlines, staffed with clinicians and non-clinicians, all of whom have received scripts and communication training. Some individual institutions have established colleague-to-colleague hotlines for telephonic consults on pain and symptom management, and coordination of care within the individual health system. We have also seen health systems develop comfort packs of medications, which are critical to symptomatic management. Patients and families can have these comfort packs delivered to their homes with detailed, consumer-friendly instructions when they don't meet criteria for admission to the hospital.

It is also critically important that palliative care teams connect colleagues with available communication and symptom management tools specific to COVID-19. CAPC has published new symptom protocols for hospital and outpatient care, and new VitalTalk communication scripts and videos that can be used by any health professional having difficult conversations with patients and families.

Be flexible and creative. Do a quick assessment of your organization's needs, and figure out how your team can be deployed to best meet those needs. This may challenge our traditional boundaries and make us work in ways that are not comfortable (e.g., telehealth), but flexibility and creativity will be needed to support our patients and colleagues with expert communication and symptom management.

How palliative care teams are working in specific care sites, like emergency departments or ICU’s is informed by the volume of cases hospitals are seeing, the culture of those hospitals, specific COVID-19 policies and procedures, and the existing relationships between palliative care and those departments. Given the universal shortages of PPE, many hospitals are implementing strategies of one team member on-site with support from the rest of the team through telehealth. The on-site clinician can triage what needs to be handled face-to-face and what can be done through telephonic support.

Primary care physicians can reach out to patients and families to have preemptive conversations about what they want should they become seriously ill with COVID-19. These conversations will neither come as a surprise nor be unwelcome to patients and families. A conversation with a trusted clinician is exactly what they need. It's reassuring to patients and families to know that there are options, their voices are being heard and documented, and that they will be supported no matter what choice they make.

The Mount Sinai Health System, for example, is going to send a mass email to all clinicians asking them to reach out to their patients to have this conversation. The email will link them to an Epic order set, Epic documentation, and a script to follow. The conversation script is available in the CAPC COVID-19 Response Resources toolkit.

We suggest going through your state or local department of health (DOH). The DOHs are coordinating these efforts, and they are very much aware of where resources are critically needed, and where they are not.

If you are a health care professional interested in volunteering in NYC, you can fill out the New York State DOH survey.

Vent withdrawal and triage are not the role of palliative care. The role of palliative care is expert communication and symptom management skills directed at seriously ill patients such as those with COVID-19.

Telehealth

There is a great disparity of caseloads, which is dependent on the different geographic areas of the country. Teams can prepare and learn from areas of the country that are in the thick of the crisis. CAPC Virtual Office Hours offer a great opportunity to convene and network with teams nationwide.

The Centers for Medicare & Medicaid Services (CMS) has created the opportunity for clinicians to bill for telephonic visitation, and peer-to-peer, patient-centered coordination of care. CAPC’s Telehealth At-A-Glance is a great resource for teams to start utilizing telehealth in the current pandemic. Furthermore, many states have passed policies that temporarily expand telehealth for both COVID-19 and non-COVID-related care. Hospices face greater restrictions, but the new Coronavirus Aid, Relief, and Economic Security (CARES) Act includes three key provisions:

  1. Face-to-face hospice telehealth provision: The law allows face-to-face encounters for recertification for hospice care to be completed using telehealth during the emergency period. NHPCO advocated for this provision as the highest priority
  2. Suspension of sequestration cuts: Payments to all Medicare programs (including hospice) will not be subject to 2% cuts resulting from sequestration. This suspension begins on May 1, 2020 and ends on December 31, 2020.
  3. Reimbursement to health care providers: The federal government will make available $100 billion through the Public Health and Social Services Emergency Fund for eligible providers (including hospices), to reimburse for diagnoses, testing or care for individuals with possible or actual cases of COVID-19.

Hotlines can be used to support the needs of patients and families, and our colleagues. Having goals of care conversations with families and providing symptom management support to our colleagues seem to be the widest application of palliative care services during COVID-19.

It is important for prescribers to staff the hotline due to the need for symptom management (e.g., breathlessness) and peer-to-peer guidance for physicians (who make up the majority of callers). If there aren’t enough prescribers to staff the hotline, it's logical to include people who are skilled at communicating about goals of care with patients and families.

Under the COVID-19 Public Health Emergency, the Center for Medicare and Medicaid Services (CMS) is allowing Medicare billing for telehealth and telephone encounters. See our Medicare Telehealth Billing tool for a summary of CMS guidance.

Resilience

There are different stages of urgency depending upon one’s region and the degree of available resources. As the demand for our services goes up, and the resources shrink, allocation of palliative care services (including staff time) will need to get far more efficient. Some health systems have opted to stop staffing their clinics and home medical care programs, in order to focus entirely on the acute care setting and telehealth. Consultations are increasingly being done through telemedicine, even within the hospital (via cell phones or computers with cameras) in an effort to protect the scarce and dwindling palliative care workforce.

To ensure the team’s physical wellness as much as possible, everyone should rigidly adhere to policies about not going to work if you feel even slightly unwell or were potentially exposed through someone else. Also, everyone must adhere to all of the hand-washing, surface-cleaning, and six-foot distance guidance.

Lastly, CAPC is developing a crisis strategic framework, which palliative care leaders can use to identify considerations for the team. It focuses on team members, resources, and sustainability throughout the crisis. For any teams that have good ideas, we would like to hear from you.

High consult volumes and limited resources put a constant strain on the overall health and morale of many palliative care teams. Teams will need to rapidly adjust, placing additional strain on the team and individual clinicians. Resources like the workforce and PPE will be scarce, and anxiety will be high (with questions such as, ‘How do I meet the needs of patients?’, ‘How do I protect myself?’, ‘Am I putting my family at risk?’).

Proactive steps palliative care teams can take include:

  1. Acknowledge the increased stress, checking in regularly with each other, and supporting each other while working through this crisis.
  2. Work as a team to schedule creatively, building in work from home options and down time. Teams should consider providing telephonic or telehealth support to patients and families, as well as colleagues, to extend their reach.
  3. Review and adjust team processes and norms during this period. For example, the model of seeing every patient on a daily basis is not the best use of human resources or PPE during this crisis.
  4. Continue to adhere to team health and wellness practices, as well as fundamentals.

Patients and Families

While CAPC’s toolkit assists clinicians with the COVID-19 pandemic, patients and families (those who have the virus, and those with questions or fears) are encouraged to visit GetPalliativeCare.org for patient-directed support and resources—some general and some disease specific. We also encourage the public to visit the CDC’s website for suggestions and up-to-date information about the virus.