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Palliative Care Amid the Pandemic: Resources for PALTC Providers and Families

      Graphical abstract

      As the devastation of the COVID-19 pandemic continues to unfold and the death rate begins to take shape with accurate reporting and more frequent testing, David Grabowski, Ph.D., a researcher at Harvard Medical School’s Health Care Policy Department who studies nursing homes, says that when the final data are in, nursing homes will probably account for about half of all COVID-19 deaths in every state — as they already do in Massachusetts, New Jersey, and Pennsylvania, among others (New York Times, May 5, 2020, https://nyti.ms/3cwZGC5). This global health crisis has increased the need to swiftly identify a resident’s preferences for medical treatment.
      Health care providers who specialize in palliative care (PC), a medical specialty focused on advance care planning and symptom management in serious illness, have been eager to bring their skill set and resources to the frontlines, especially to the post-acute and long-term care setting. Interventions such as initiating discussions to address goals of care and using therapies to relieve distressing symptoms (physical, social, and/or spiritual) are concepts inherent in PC, and they are vital to the care of older adults with COVID-19.
      Although the delivery of PC differs throughout PALTC, there are multiple ways PC concepts can support health care professionals engaged in the care of seriously ill or dying residents. We review the resources and modalities used by PC providers in the response to COVID-19 to help in educating patients, families, health care colleagues, and the general public about what PC is and how these specialized clinicians contribute to the care of PALTC residents.

      Online resources

      Multiple evidence-based resources to prepare and educate both patients and health care professionals have been created, and they are freely available during this pandemic. Table 1 provides a list of resources for patients and families to use for guidance with tough decisions, such as whether mechanical ventilation or cardiopulmonary resuscitation is appropriate. The Conversation Project and Five Wishes have printable packets to complete for advanced care planning. My Living Voice allows an individual to draft an advance directive online that can be printed. Physician Orders for Life-Sustaining Treatment (POLST), a national paradigm for medical orders at the end of life, offers both patients and health care professionals informative resources.
      Table 1Resources for Patients and Families
      NameWebsiteComments
      Conversation Projecthttps://theconversationproject.org/Start-up kits for serious illness conversations; COVID-19-specific kits available
      Five Wisheshttps://fivewishes.org/Information for both patients and providers; easy-to-use legal advance directive; COVID-19-specific information available
      My Living Voicehttps://www.mylivingvoice.com/Step-by-step resource to create an online advance directive (can be printed)
      POLSThttps://polst.org/Patient-focused website of POLST forms and resources
      Respecting Choiceshttps://respectingchoices.org/covid-19-resources/#planning-conversationsFree COVID-19-specific resources for proactive planning conversations
      Table 2 provides a list of commonly used medical and PC resources for health care professionals. VitalTalk and the Serious Illness Conversation Guide provide evidence-based, tailored questions to ask during serious illness conversations. VitalTalk also offers practical videos that demonstrate how to discuss these questions. VitalTalk and the Center to Advance Palliative Care (CAPC) both also have serious illness conversation guides and symptom management resources specifically targeted to COVID-19. Palliative Care Fast Facts also offers quick references for symptom management.
      Table 2Palliative Care Resources for Health Care Providers
      NameWebsiteComments
      VitalTalkhttps://www.vitaltalk.org/Website or smartphone app that provides specific examples of questions to use during serious illness conversations; COVID-19-specific questions available
      CAPChttps://www.capc.org/toolkits/covid-19-response-resources/Free COVID-19 resources (other trainings require membership)
      POLSThttps://polst.org/professionals-page/Health care professional website for POLST forms and resources
      Serious Illness Conversation Guide (Ariadne Labs)https://www.aafp.org/afp/2019/0301/p281.htmlEditorial from American Family Physician 2019 with printable pocket guide
      Palliative Care Fast Factshttps://www.mypcnow.org/fast-facts/Website or smartphone app with quick facts for symptom management (Note that some areas have not been updated since 2015.)
      Social Work Hospice & Palliative Care Network (SWHPN)https://www.swhpn.org/covid-19Resources for social workers to aid with serious illness conversations
      AMDA Telehealth Resourceshttps://paltc.org/node/6297List of links to telehealth resources
      The use of these resources may be helpful if a PALTC facility does not have a dedicated PC provider and wishes to offer additional support to the residents’ families or to further educate PALTC staff.

      Telehealth consultations

      Because not all PALTC facilities can support an in-house PC team due to lack of resources and funding (Palliat Med 2020:34:555–557), PC consultant teams can bridge the gap for PALTC patients, families, and staff. After PALTC facilities were urged to protect their vulnerable residents by limiting the entry of external personnel, PC teams made rapid, drastic changes to their practice to remain in contact with patients and families.
      Like many other health care professionals, PC providers have incorporated the use of video technology. Video conferencing over platforms such as Zoom and FaceTime have facilitated interactions to provide comfort or closure in otherwise impossible situations. PC providers have successfully connected patients with their families, regardless of their location, through telehealth and mediated serious conversations. They’ve also supported patients and families through final goodbyes.
      In addition, software that supports electronic signatures is being used to complete crucial documents such as do not resuscitate (DNR) orders, POLST, and hospice election forms. These examples of innovative care delivery would not have been possible without flexibility and cooperation on the part of PC providers and PALTC staff to give patients appropriate, working access to this technology.
      The impact of COVID-19 has been devastating in PALTC, and serious illness conversations and advance care planning have never been more critical. How the COVID-19 pandemic will impact the long-term delivery of health care remains unclear, but one thing is certain: incorporating PC concepts into the care of individuals with chronic, life-limiting illnesses across all health care settings empowers both patients and families, allowing them to have more information and perhaps a plan for when the unimaginable occurs.
      Melissa McClean is a nurse practitioner and medical director of community-based palliative care (CBPC) at Capital Caring Health. Her area of interest is the delivery of sustainable models of CBPC to increase hospice utilization and ensure a quality patient and family experience. She may be reached at [email protected] .
      Victoria Nalls is the Director of Education for Capital Caring Health (CCH), where she collaborates with all CCH service lines to meet their educational needs as well as provides wound care consults to CCH patients in their home environment. She may be reached at [email protected] .