Mental health of healthcare professionals

Staff should be offered special psychological support (Krishna et al., Reference Krishna, Neo and Chia2020; Szczerbińska, Reference Szczerbińska2020) and regular supervision to prevent burnout (Downar and Seccareccia, Reference Downar and Seccareccia2010; Nouvet et al., Reference Nouvet, Sivaram and Bezanson2018; WHO, 2018; Krakauer et al., Reference Krakauer, Daubman and Aloudat2019; Browne et al., Reference Browne, Roy and Phillips2020; Chidiac et al., Reference Chidiac, Feuer and Naismith2020; Hendin et al., Reference Hendin, La Rivière and Williscroft2020; Hill et al., Reference Hill, Beattie and Geller2020; Humphreys et al., Reference Humphreys, Schoenherr and Elia2020; Janssen et al., Reference Janssen, Ekström and Currow2020; Boufkhed et al., Reference Boufkhed, Harding and Kutluk2021; Varani et al., Reference Varani, Ostan and Franchini2021). Peer-support (telephone or virtual) and informal debriefing to support teams’ day-to-day work should be implemented (Brown et al., Reference Brown, Peck and Humphreys2020; Mehta and Smith, Reference Mehta and Smith2020; Pattison, Reference Pattison2020; Schoenherr et al., Reference Schoenherr, Cook and Peck2020; Selman et al., Reference Selman, Chao and Sowden2020). “Palliative care provider groups” should be formed to supply mutual support and coverage if a team member becomes overwhelmed by the situation (Arya et al., Reference Arya, Buchman and Gagnon2020; Mehta and Smith, Reference Mehta and Smith2020). Increased collaboration can decrease feelings of loss of control and minimize trauma response in teams (Brown et al., Reference Brown, Peck and Humphreys2020). Another important aspect is to recognize the hard work of staff in concrete ways (Bern-Klug and Beaulieu, Reference Bern-Klug and Beaulieu2020), ensure resilience (Etkind et al., Reference Etkind, Bone and Lovell2020), and focus on wellness and self-care (Hannon et al., Reference Hannon, Mak and Al Awamer2020). Therefore, resources for self-care and coping should be created, formalized, and disseminated (Brown et al., Reference Brown, Peck and Humphreys2020), including healthy food, enough sleep, social connections, and limiting news media (Kluger et al., Reference Kluger, Vaughan and Robinson2020).

Physical face-to-face visits

It is necessary to continue to allow physical visits, even if in limited form (e.g., only one person for a limited time after having determined that the relative has no symptoms or infection) (Estella, Reference Estella2020; Lawrie and Murphy, Reference Lawrie and Murphy2020; Nevzorova, Reference Nevzorova2020). This is especially important for dying patients, as it has a great impact on the subsequent bereavement and processing of death (Hart et al., Reference Hart, Turnbull and Oppenheim2020; Janssen et al., Reference Janssen, Ekström and Currow2020; Mercadante, Reference Mercadante2020; Münch et al., Reference Münch, Müller and Deffner2020; Selman et al., Reference Selman, Chao and Sowden2020). Family members should be allowed to visit deteriorating patients (Guessoum et al., Reference Guessoum, Moro and Mallet2020; Halek et al., Reference Halek, Reuther and Schmidt2020; Selman et al., Reference Selman, Chao and Sowden2020). If it is not possible, it should be explicitly explained to the caring relatives that the patient will be adequately accompanied by staff (ÖGARI, 2020). It should not be forgotten that hospice workers and volunteers are also a crucial part of the circle of visitors to support patients and families (DGP, 2020).

Appropriate visiting concepts, including safety measures, should be developed and used in the institutions (DGP, 2020; Münch et al., Reference Münch, Müller and Deffner2020; Murray et al., Reference Murray, Moine and Engels2020). It is important to communicate in an open way what visitor regulations are in place and why. Therefore, institutions should provide information about their “pandemic policies” on their website and guide patients and relatives through internal processes and regulations (Hart et al., Reference Hart, Turnbull and Oppenheim2020; Münch et al., Reference Münch, Müller and Deffner2020). Furthermore, evidence-based interventions, like rapid COVID-19 testing, tracing, and isolating cases can be established to avoid infections in healthcare institutions and to enable contact (Curley et al., Reference Curley, Broden and Meyer2020; Murray et al., Reference Murray, Moine and Engels2020).

Personal protective equipment

A frequent recommendation to enable visits is to include the provision of PPE to relatives and the development and provision of training on the appropriate use (Arya et al., Reference Arya, Buchman and Gagnon2020; Bear et al., Reference Bear, Simpson and Angland2020; Bern-Klug and Beaulieu, Reference Bern-Klug and Beaulieu2020; Eriksen et al., Reference Eriksen, Grov and Lichtwarck2020; Estella, Reference Estella2020; Hendin et al., Reference Hendin, La Rivière and Williscroft2020; Janssen et al., Reference Janssen, Ekström and Currow2020; Kent et al., Reference Kent, Ornstein and Dionne-Odom2020; Krones et al., Reference Krones, Meyer and Monteverde2020; Mercadante, Reference Mercadante2020; Münch et al., Reference Münch, Müller and Deffner2020; Selman et al., Reference Selman, Chao and Sowden2020). Family caregivers should be considered when distributing PPE to protect themselves when caring for infected patients at home (Kent et al., Reference Kent, Ornstein and Dionne-Odom2020). PPE allows staff members to assist the patient during their last hours (Mottiar et al., Reference Mottiar, Hendin and Fischer2020), which reduces the risk of patients dying alone in isolation (Abbott et al., Reference Abbott, Johnson and Wynia2020).

Goals of care discussion/advance care planning

It is essential to be in contact with the family if the patient cannot express himself, e.g., with regard to goals of care discussions (Eriksen et al., Reference Eriksen, Grov and Lichtwarck2020; Kluger et al., Reference Kluger, Vaughan and Robinson2020). Goals of care discussions/advance care planning (GoC/ACP) and patient autonomy emerged to be an even more important topic during pandemic times.

The consensus of the synthesized literature is that GoC /ACP needs to be updated or created, especially for seriously ill people, to prevent triage discussions and to assign a specific contact person for each patient if possible. This is especially the case for patients who are older or suffer from advanced chronic diseases and patients that live in community and nursing homes/long-time care settings (Abbott et al., Reference Abbott, Johnson and Wynia2020; Adams, Reference Adams2020; Alhalabi and Subbiah, Reference Alhalabi and Subbiah2020; Arya et al., Reference Arya, Buchman and Gagnon2020; Bajwah et al., Reference Bajwah, Wilcock and Towers2020; Battisti et al., Reference Battisti, Mislang and Cooper2020; Bern-Klug and Beaulieu, Reference Bern-Klug and Beaulieu2020; Borasio et al., Reference Borasio, Gamondi and Obrist2020; Brighton and Evans, Reference Brighton and Evans2020; Brown et al., Reference Brown, Peck and Humphreys2020; Clarfield et al., Reference Clarfield, Dwolatzky and Brill2020; Cooper and Bernacki, Reference Cooper and Bernacki2020; Desai et al., Reference Desai, Kamdar and Mehra2020; Estella, Reference Estella2020; Fadul et al., Reference Fadul, Elsayem and Bruera2020; Flint and Kotwal, Reference Flint and Kotwal2020; Gillessen and Powles, Reference Gillessen and Powles2020; GovScot and SPCPA, 2020; Hendin et al., Reference Hendin, La Rivière and Williscroft2020; Hopkins et al., Reference Hopkins, Lovick and Polak2020; Inzitari et al., Reference Inzitari, Udina and Len2020; Janssen et al., Reference Janssen, Ekström and Currow2020; Kamal et al., Reference Kamal, Casarett and Meier2020; Kent et al., Reference Kent, Ornstein and Dionne-Odom2020; Knights et al., Reference Knights, Knights and Lawrie2020; Kotze and Roos, Reference Kotze and Roos2020; Kunz and Minder, Reference Kunz and Minder2020; Lawrie and Murphy, Reference Lawrie and Murphy2020; Michels and Heppner, Reference Michels and Heppner2020; Mohile et al., Reference Mohile, Blakeley and Gatson2020; Moore, Reference Moore2020; Moore et al., Reference Moore, Sampson and Kupeli2020; Mottiar et al., Reference Mottiar, Hendin and Fischer2020; Münch et al., Reference Münch, Müller and Deffner2020; NHS, 2020; Núñez et al., Reference Núñez, Madison and Schiavo2020; Peate, Reference Peate2020; Petriceks and Schwartz, Reference Petriceks and Schwartz2020; Raftery et al., Reference Raftery, Lewis and Cardona2020; Rhee et al., Reference Rhee, Grant and Detering2020; Rosa et al., Reference Rosa, Ferrell and Wiencek2020; Selman et al., Reference Selman, Chao and Sowden2020; Sieber, Reference Sieber2020; Spicer et al., Reference Spicer, Chamberlain and Papa2020; Szczerbińska, Reference Szczerbińska2020; Task Force in Palliative Care (PalliCovidKerala), 2020; Ting et al., Reference Ting, Edmonds and Higginson2020; Wallace et al., Reference Wallace, Wladkowski and Gibson2020; Weinkove et al., Reference Weinkove, McQuilten and Adler2020; WHO, 2020). If possible technical possibilities (e.g., telecommunication) can be used for GoC /ACP, to keep the risk of infection low for all involved (Mehta and Smith, Reference Mehta and Smith2020; Lopez et al., Reference Lopez, Finuf and Marziliano2021).

Every inpatient should have a treatment escalation plan (control for patient, relatives, and healthcare workers) so that treatment decisions do not have to be made at short notice in a crisis (Downar and Seccareccia, Reference Downar and Seccareccia2010; Clarfield et al., Reference Clarfield, Dwolatzky and Brill2020). Building a therapeutic relationship is very important (Mottiar et al., Reference Mottiar, Hendin and Fischer2020) and patients have to be involved in decisions. If this is not possible, the clinicians should rely on relatives (shared-decision-making between team, patient, and relatives) (Eriksen et al., Reference Eriksen, Grov and Lichtwarck2020; Feder et al., Reference Feder, Akgün and Schulman-Green2020; Gaur et al., Reference Gaur, Pandya and Dumyati2020; Koffman et al., Reference Koffman, Gross and Etkind2020; Milano, 2020; Santos et al., Reference Santos, Tavares and Tzanno-Martins2020). Already existing assessment tools should be used to support decisions and can be included in GoC/ACP discussions with patients as well (Fiorentino et al., Reference Fiorentino, Pentakota and Mosenthal2020; Lapid et al., Reference Lapid, Koopmans and Sampson2020; McIntosh, Reference McIntosh2020). The patient's category status in the medical record should be updated accordingly (Hendin et al., Reference Hendin, La Rivière and Williscroft2020). Patients and relatives should be informed openly and honestly about the consequences and risks (infection/restricted visiting arrangements) that can result from a hospital stay (Singh et al., Reference Singh, Deodhar and Chaturvedi2020).

Healthcare systems can cooperate with the home care setting to ensure that primary care providers create awareness of GoC/ACP and that all can offer basic palliative care goals of care and symptom control (Essien et al., Reference Essien, Eneanya and Crews2020; Lopez et al., Reference Lopez, Finuf and Marziliano2021). The crisis could offer a chance to discuss GoC/ACP more openly in the population and to increase death literacy (Lapid et al., Reference Lapid, Koopmans and Sampson2020).

Communication in times of pandemics

All rules of communication that exist in palliative care continue to apply (Gibbon et al., Reference Gibbon, GrayBuck and Mehta2020; Santos et al., Reference Santos, Tavares and Tzanno-Martins2020; Schlögl and Jones, Reference Schlögl and Jones2020). Additionally, a COVID-19 specific language should be used (Nakagawa et al., Reference Nakagawa, Abrukin and Blinderman2020) (e.g., “COMMUNICoVID” — How to communicate with families living in complete isolation) (Mistraletti et al., Reference Mistraletti, Gristina and Mascarin2020) and it is strongly recommended to encourage palliative care providers to honestly communicate the clinical uncertainty (e.g., of the COVID-19 trajectory) to families and patients. It is critical to provide transparent medical care, appropriate support, and counseling (Burke et al., Reference Burke, Rome and Constanza2020). Staff should be made aware of barriers resulting from communicating with patients in PPE (especially with masks/face shields) and trained in overcoming them (Arya et al., Reference Arya, Buchman and Gagnon2020) (e.g., pinning photos of their faces on the PPE to humanize themselves) (Brown-Johnson et al., Reference Brown-Johnson, Vilendrer and Heffernan2020; Reidy et al., Reference Reidy, Brown-Johnson and McCool2020).

Telecommunication/telemedicine

Recently, communication has increasingly taken place via telephone and digital/virtual media to maintain palliative and end-of-life care. A few points should be noted when using electronic devices in healthcare. The equipment used has to be disinfected regularly (Cormi et al., Reference Cormi, Chrusciel and Laplanche2020). Staff taking care of patients with serious COVID-19 infections should receive training in online clinician–family communication (Janssen et al., Reference Janssen, Ekström and Currow2020) and needs training in online communication (e.g., Vital Talk COVID-19 communication guides) (Gray and Back, Reference Gray and Back2020). Contact with the family should be made at least once a day (Adams, Reference Adams2020; Bajwah et al., Reference Bajwah, Wilcock and Towers2020; Hart et al., Reference Hart, Turnbull and Oppenheim2020; Janssen et al., Reference Janssen, Ekström and Currow2020; Münch et al., Reference Münch, Müller and Deffner2020), preferably by the same person, possibly by email, so that the relatives are informed about the situation (Milano, 2020). Videophone communication should be preferred if possible, especially when breaking bad news (Alhalabi and Subbiah, Reference Alhalabi and Subbiah2020; Hart et al., Reference Hart, Turnbull and Oppenheim2020). There are also patients or families for whom online communication is not suitable because they are too ill or they do not have the technical possibilities. They should rather be contacted by telephone or be prioritized for personal contact (Kent et al., Reference Kent, Ornstein and Dionne-Odom2020).

Virtual visits

Virtual visits can be used, when face-to-face communication is not essential, to fit social distancing rules or when people are in quarantine. Virtual visits are very helpful when urgent decisions are necessary, but it is not appropriate to talk on the phone or when a personal visit would cause a delay or to prevent unnecessary use of PPE (Fausto et al., Reference Fausto, Hirano and Lam2020; Hawkins et al., Reference Hawkins, Gannon and Palfrey2020). Virtual contacts should be facilitated and daily updates should be organized even when the patient is not able to talk (Krakauer et al., Reference Krakauer, Daubman and Aloudat2019; Abbott et al., Reference Abbott, Johnson and Wynia2020; Chidiac et al., Reference Chidiac, Feuer and Naismith2020; Cooper and Bernacki, Reference Cooper and Bernacki2020; Curley et al., Reference Curley, Broden and Meyer2020; Farnood and Johnston, Reference Farnood and Johnston2020; Guessoum et al., Reference Guessoum, Moro and Mallet2020; Hill et al., Reference Hill, Beattie and Geller2020; Knights et al., Reference Knights, Knights and Lawrie2020; Mayland et al., Reference Mayland, Harding and Preston2020; Mehta and Smith, Reference Mehta and Smith2020; Münch et al., Reference Münch, Müller and Deffner2020; Nakagawa et al., Reference Nakagawa, Abrukin and Blinderman2020; Rosa et al., Reference Rosa, Ferrell and Wiencek2020; Selman et al., Reference Selman, Chao and Sowden2020; Ting et al., Reference Ting, Edmonds and Higginson2020; Yardley and Rolph, Reference Yardley and Rolph2020; Pahuja and Wojcikewych, Reference Pahuja and Wojcikewych2021). This could be provided by additional staff (e.g., students, retired professionals) (Chidiac et al., Reference Chidiac, Feuer and Naismith2020). Therefore, structures for use of telecommunication should be set up (Feder et al., Reference Feder, Akgün and Schulman-Green2020; Gibbon et al., Reference Gibbon, GrayBuck and Mehta2020; Kent et al., Reference Kent, Ornstein and Dionne-Odom2020; Perrone et al., Reference Perrone, Zerbo and Bilotta2020; Schoenherr et al., Reference Schoenherr, Cook and Peck2020), while being cautious if it creates stress in actively dying patients (Fusi-Schmidhauser et al., Reference Fusi-Schmidhauser, Preston and Keller2020; Selman et al., Reference Selman, Chao and Sowden2020). Through virtual visits, consultations [including symptom control (Kent et al., Reference Kent, Ornstein and Dionne-Odom2020) like monitoring opioid use (Adhikari et al., Reference Adhikari, Gupta and Sharma2020)] in clinics or medical offices can be reduced and thus lower the risk of infection (Perrone et al., Reference Perrone, Zerbo and Bilotta2020). In general, it is important to humanize technology and providers should prepare the family prior to the conference for what they may see. Furthermore, naming everyone in the room and how they are connected, explaining how the patient is being monitored and have guidance on what to say is helpful. Regular reassurance and check-ins should be provided. Pitfalls of technology (setting expectations, having a back-up plan, considering a test call) and elements of physical and human contact (singing favorite songs, having the family watch elements of comforting care such as holding the patient's hand, sharing favorite stories) should be considered (Ritchey et al., Reference Ritchey, Foy and McArdel2020).

There is emerging evidence on the utility of telemedicine in the provision of palliative care (Fadul et al., Reference Fadul, Elsayem and Bruera2020). However, adequate preparation and technical expertise are needed for an effective implementation into acute care settings. Palliative care and hospice teams will need to be proactive in identifying, implementing, and training on the most suitable remote platform to deliver services to patients and families (Creutzfeldt et al., Reference Creutzfeldt, Schutz and Zahuranec2020; Fadul et al., Reference Fadul, Elsayem and Bruera2020). It is crucial to ensure good WIFI connection and communication technology infrastructure (Humphreys et al., Reference Humphreys, Schoenherr and Elia2020; Münch et al., Reference Münch, Müller and Deffner2020), to support and train staff in technology use (Hower et al., Reference Hower, Pfaff and Pförtner2020), and to organize information and data flow (Mody and Cinti, Reference Mody and Cinti2007; Behrens and Naylor, Reference Behrens and Naylor2020; Boufkhed et al., Reference Boufkhed, Namisango and Luyirika2020; Brown et al., Reference Brown, Peck and Humphreys2020; Hanratty et al., Reference Hanratty, Burton and Goodman2020; Hower et al., Reference Hower, Pfaff and Pförtner2020; Knights et al., Reference Knights, Knights and Lawrie2020). Governments should support digital education for aged care and on communication technology infrastructure, digital proficiency of staff and patients, and the provision of tech staff (Siette et al., Reference Siette, Wuthrich and Low2020). Furthermore, they should establish guidance (Rubinelli et al., Reference Rubinelli, Myers and Rosenbaum2020), e.g., on balancing data security/privacy and use of communication technology (Hart et al., Reference Hart, Turnbull and Oppenheim2020).

Care after death/bereavement support

Virtual bereavement counseling and support groups should be provided to relatives (Arya et al., Reference Arya, Buchman and Gagnon2020; Hado and Friss Feinberg, Reference Hado and Friss Feinberg2020). This might help coping with remote send-offs such as funeral live-streaming and saying goodbye via video chat (Frydman et al., Reference Frydman, Choi and Lindenberger2020; Moore, Reference Moore2020; Núñez et al., Reference Núñez, Madison and Schiavo2020). Relatives could be encouraged to express grief online, via telephone, letters, or videos and/or have online funerals (Farrell et al., Reference Farrell, Francis and Brown2020; Selman et al., Reference Selman, Chao and Sowden2020). It is suggested to have a proper funeral after the pandemic or have a commemoration at home. Staff members can also provide an image of the deceased ones’ faces to the relatives (with permission) for better coping with bereavement (Münch et al., Reference Münch, Müller and Deffner2020).

Triage/ethic committees

Each hospital that does not have an ethics committee ought to organize one in case of triage. Complex triage decisions should never rest on a single person but involve an interdisciplinary team (e.g., existing of an intensive care physician, an internist, and a palliative care specialist) (Borasio et al., Reference Borasio, Gamondi and Obrist2020; Mercadante, Reference Mercadante2020; Mills et al., Reference Mills, Kaye and Mody2020; Obata et al., Reference Obata, Maeda and Rizk2020).

Primary care staff

There are special recommendations for primary care staff (including ICUs and emergency departments). For these teams, it is relevant to embed palliative care into their department and to organize regular rounds to support and promote appropriate consultation (Adams, Reference Adams2020) and to screen for patients with palliative care needs (Adams, Reference Adams2020; Fusi-Schmidhauser et al., Reference Fusi-Schmidhauser, Preston and Keller2020; Gibbon et al., Reference Gibbon, GrayBuck and Mehta2020; Haydar et al., Reference Haydar, Lo and Goyal2020; Lee et al., Reference Lee, Abrukin and Flores2020). This includes peer education and support (Mody and Cinti, Reference Mody and Cinti2007; Brown et al., Reference Brown, Peck and Humphreys2020; Hado and Friss Feinberg, Reference Hado and Friss Feinberg2020; Hower et al., Reference Hower, Pfaff and Pförtner2020; Rim et al., Reference Rim, Kelly and Meletio2020) as well as engagement with institutional crisis response teams to ensure palliative care needs are incorporated into system-level response plans (Feder et al., Reference Feder, Akgün and Schulman-Green2020; Münch et al., Reference Münch, Müller and Deffner2020; Sese et al., Reference Sese, Makhoul and Hoeksema2020; Pahuja and Wojcikewych, Reference Pahuja and Wojcikewych2021). Pathways can be identified for rapid consultation and involvement of palliative care teams (Rosa et al., Reference Rosa, Ferrell and Wiencek2020). The integration of palliative care into different settings and the involvement of specialists helps not only to provide essential care to patients but also to reduce the emotional burden of healthcare workers being at frontline (Nevzorova, Reference Nevzorova2020).

System level

Governments must recognize the hospice and palliative care sector as an integral component of the healthcare systems’ response to pandemics (WHO, 2018; Costantini et al., Reference Costantini, Sleeman and Peruselli2020; Laxton et al., Reference Laxton, Nace and Nazir2020; Mercadante, Reference Mercadante2020; Salifu et al., Reference Salifu, Atout and Shivji2020) and the need for ongoing education and training offered to healthcare workers (WHO, 2018). Collaborative relationships between generalist and specialist providers of palliative care have to be developed and better understood to inform national policy and to evolve recommendations for service delivery during future pandemics (Mitchell et al., Reference Mitchell, Maynard and Lyons2020).